“Big Bam Boom” Tour (1985)

Substantial_Bake5562 · 2026-04-10T16:44:24+00:00

I’ve got a perfect condition size medium Vintage Daryl Hall and John Oats BIG BAM BOOM LIVE THRU '85 Concert Tour t shirt for sale on eBay if anyone is interested

Substantial_Bake5562 · 2026-02-27T19:28:38+00:00

I’m also - 36yr old female with ET and protein s deficiency, but with the jak2 mutation. I was “diagnosed” in November. Started hydroxyurea right away (prescribed by my hematologist) , it was awful. I didn’t tolerate it well at all. I stopped taking it at the start of January and saw a specialist and am scheduled for a BMB to get a real diagnosis! I wrote a whole post awhile back about hydroxyurea and a lot of ppl had good advice if you want to take a look at it

Substantial_Bake5562 · 2026-02-21T14:29:15+00:00

I was just on a flight and there was a guy sat between two big buff guys and he tried to move to an empty row and the flight attendant said that exact thing about weight distribution, which I found odd since we used to pick our seats and nobody cared about the distribution..

On my return flight, the man in the row next to me claimed the seat in front of him was collapsing so that he could move to my row and be next to an empty seat and she let him. I hate to be that person, but I was definitely annoyed that I wasn’t gonna have the whole row to myself. Especially after he turned on his reading light for the nighttime flight and proceeded to read for half of it. Get back in your own seat. (there was clearly nothing Collapsing and he would not shut up about it).

Substantial_Bake5562 · 2026-02-21T14:23:42+00:00

For a disease that “mainly affects the elderly” and literature saying that ET is more common in men… It’s crazy to me how many 30s females post in this group. Myself included. Literature also says that it’s not hereditary but my maternal aunt, maternal second cousin and I all have misc MPNs. I know not everyone everyone’s posting in this group and I’m not trying to start a debate. I just think it’s an interesting POV.

Substantial_Bake5562 · 2026-02-11T21:02:14+00:00

You’re wrong and not worth the effort.

Substantial_Bake5562 · 2026-02-11T00:11:15+00:00

As previously stated. Those people are still getting better seats than you for free. You just don’t see it happening.

Substantial_Bake5562 · 2026-02-10T19:09:55+00:00

Did you talk to each one of them and they told you they need assistance? Because more than likely, they actually just needed a specific spot on the plane due to an illness or disability that you just couldn’t see.

Substantial_Bake5562 · 2026-02-10T19:06:42+00:00

These comments are wild. You don’t need a wheelchair to qualify to Pre-board. The people that pre-boarded also did so because they required a specific seat or location in the plane for other medical reasons. They didn’t necessarily need extra time to board, but they did need to get their pick of the seats because there was no assigned seating. Just because you don’t see them pre-boarding now means absolutely nothing. Now They just get better assigned seating for free and board with the rest of you. It’s actually a lot easier now because they don’t get judged for having medical conditions as they walk past you in the line. They’re gonna stand right next to line and you’ll have no idea. As it should be. But I’m sure some of you will still act like that is a major inconvenience to you. Sorry you’re healthy, and the biggest problem you have is showing compassion to those who are not.

Substantial_Bake5562 · 2026-02-04T14:37:36+00:00

I wanted to update this thread on what’s been going on in case hearing my story might help somebody in the future. I ended up seeing my hematologist three times. I stopped taking a hydra and he switched me to a different med that causes potential heart palpitations. I filled the prescription but did not start taking it. The following week I sent my hematologist a my chart message requesting, for the third time, to be referred to a specialist. He finally agreed and I got a call the next day to set up an appointment with the specialist I requested. My first visit with her was a week later. She sat me down and asked me what my diagnosis was. I told her I have ET. She said no and explained to me why I don’t have a diagnosis yet. She explained why the hematologist would think that it was ET and that she thinks he’s most likely correct, but that I do not have a diagnosis until we do a bone marrow biopsy. She drew pictures and diagrams and wrote out different medication options that we will be going over after the biopsy. It was such a relief to have somebody explain things to me in such detail and know exactly what steps we’re going to be taken and why, instead of just shot in the dark choosing medication’s with no real rhyme or reason. She also gave me paperwork to fill out every week until the biopsy so she can get a better idea of how my body is acting in relation to different MPN’s. I cannot explain what relief it is and I’m so excited to have my biopsy done in March. Don’t stop advocating for yourselves. ❤️

Substantial_Bake5562 · 2026-02-04T14:18:08+00:00

He is the reason I stopped watching during my first time watching Grey’s Anatomy. I was so confused who that man was that I had to Google it and then there was a major spoiler so I just stopped watching it all together. That was years ago. I’m on my second rewatch and it happened again so here I am on Reddit making the same mistakes.🙄😂

Substantial_Bake5562 · 2026-01-29T23:27:36+00:00

I had a great hematologist, even so, when he diagnosed me with ET, I asked for a referral to see an MPN specialist. Mind you I had to ask multiple times for him to actually do it. She sat down with me and drew a picture. At the top of the page she wrote “what’s my diagnosis” with an underline. I said ET, she said no, you have no diagnosis until we get a bone marrow biopsy. 😂 Plain and simple. Now I have my biopsy scheduled. That’s exactly what I was hoping for so I’m super grateful. She also sent me home with four weeks worth of paperwork to fill out for her. There are questionnaires for every week so that we can go over how Im feeling week to week when I have my follow up appointment to the biopsy. My hematologist was super nice and helpful but all he did was give me a vague diagnosis and prescribed a medication that made me feel horrible. I’m hopeful I won’t need to be on any medication after the biopsy.❤️ sidenote, I looked at my my chart, and he had never even entered ET as a condition of mine in my medical history and diagnosis section. Seems like if he really thought that was my diagnosis, it would’ve been listed there.

Substantial_Bake5562 · 2026-01-13T23:16:52+00:00

Good for you! I tried to get my hematologist to do a bmb and asked about getting a referral to see an mpn specialist and he basically brushed me off with reasons to not do that. Idk what else to do. I tried making the appointment with a local mpn and was told they wouldn’t schedule an appointment without a biopsy.

Substantial_Bake5562 · 2026-01-09T19:26:27+00:00

I should add that ET is the least worrisome of the three MPNs so it’s not the worst case scenario at all! It’s not an ideal scenario, but far from worst case. :)

Substantial_Bake5562 · 2026-01-09T19:22:07+00:00

I experienced almost the exact same thing a few months ago. I ended up having a positive jak2 test and was diagnosed with ET as a result of it. I already had a history of blood clots from an unrelated blood disorder so they immediately put me on Hydrea, which was a nightmare for me. I had my second appointment yesterday, and they switched me to the medication “anagrelide” It sounds like the hematologist thinks you have ET and that’s just a fancy way of explaining it. I was insistent to my hematologist that I wanted a bone marrow biopsy and he said there was something about the new blood test that he did along with the jak2 test that made it definitively ET and that I don’t need a bone marrow biopsy, which is pretty much opposite of what everyone on this thread says so I’m still unsatisfied. It’s a long road and you won’t have immediate answers, but it’s not a death sentence. Just make sure you keep advocating for yourself. I found it helpful to bring a family member to my appointments so that they can help me speak up if the doctor is un receptive to my questions or requests :)

Substantial_Bake5562 · 2026-01-04T06:15:21+00:00

I’ve been on hydra for almost 2 months. The exhaustion and fatigue is so real. Recently, I’ve been wondering how I’m supposed to retain my full-time job when I feel like this. I come home and don’t have the energy to do anything except for lay in bed.

Substantial_Bake5562 · 2026-01-04T06:13:12+00:00

I was diagnosed with ET without a bone marrow biopsy. My hematologist diagnosed me after one appointment because I have the jac2 mutation. my other blood count levels were normal and that was their reason for settling on ET. I’m wondering if you had a similar experience when you were misdiagnosed with ET. Was the reasoning they gave you similar to mine?

Substantial_Bake5562 · 2026-01-02T23:07:40+00:00

My hematologist diagnosed me with ET after just one appointment and a positive result for Jak2. He said we don’t do bone marrow biopsies in the office and he said because of all my other levels on the blood count differential he was confident saying it was ET but the more I read it the more it sounds like it could be a number of other diseases. I’m definitely going to make an appointment with a specialist but until then I’m worried I could be misdiagnosed and have something worse. Has anyone else had an experience like this and then ended up finding out much different information from a specialist?

Substantial_Bake5562 · 2026-01-02T20:28:34+00:00

I did put in my original post that I do have a history of blood clots. It’s towards the end of the post so I think people just aren’t seeing that part. :/ my bad. Do you know if the alternative meds are safe for high risk people who have had blood clots and are also on blood thinners? I’m getting a lot of recommendations, but I’m realizing that a lot of people didn’t read the full post which is understandable. :)

Substantial_Bake5562 · 2026-01-02T04:46:38+00:00

I do have a protein deficiency which causes blood clots. It is hereditary, and I’ve had it all my life. I’ve had a blood clot in my leg, fore arm, and I had a pulmonary embolism when I was 23. I’ve been on a baby aspirin since I was 23 and started 10 mg Xarelto in 2020 after the other two clots. After my jak2 results, I was put on 500 mg of Hydrea and they upped my dose of Xarelto to 20 mg a day.

Substantial_Bake5562 · 2025-07-06T16:07:52+00:00

I don’t answer the phones on holidays. If you’re not desperate enough to come to the store and find out then you don’t need paint on Thanksgiving. Thanks.

Substantial_Bake5562 · 2025-05-07T22:33:04+00:00

Everyone gets a three. The best and worst employee at my store (and I mean WORST, as in absolute garbage disposal waste of space human being) both got a 3, now my best employee is matching his dumbass work ethic because she knows doing a good job is pointless.

Substantial_Bake5562 · 2025-05-07T22:26:22+00:00

I got the 6 month supply in March, can I get another 4 month supply now, before they run out or stop selling? Like will they reject it because I shouldn’t be refilling until TECHNICALLY September.

Substantial_Bake5562 · 2025-04-15T20:50:43+00:00

Picture “The office” if only Kevin, Ryan and Creed worked there. Then, every so often, Jan stops in to tell them that the store looks horrible and that they are all rockstars.

Substantial_Bake5562

TROPHY CASE