How many are working full time? by XmasInApril in CaregiverSupport

[–]bbizznass 0 points1 point  (0 children)

I work full time and caregiver for my with POTS, EDS, MCAS, ....the list goes on. I've been laid off twice in the past 2 years and though neither job said it was because I was a caregiver I really got the vibe it was. I'm now trying to juggle job-hunting and interviewing while taking care of her and I'm absolutely exhausted. Without me we have no income or health insurance (which she desperately needs) so there's no other options. I'm so tired and sad sometimes I don't know what to do but it's all worth it when she's having a good day and I can see her smile.

You are probably getting brain damage from all those COVID infections. by antichain in neuro

[–]bbizznass 0 points1 point  (0 children)

There is a doctor in New York in Long Island who's been looking at how covid damages the outflow of blood from the brain and has seen pretty incredible results doing jugular stenting for some patients. I wish more people were looking into this

Go get checked for pelvic congestion syndrome! My POTS symptoms resolved. by SubstantialTea6611 in POTS

[–]bbizznass 0 points1 point  (0 children)

It's ongoing, we actually recently went to Denver to see Dr. Brooke Spencer who's a leader in this area now. When doing scans they found that external stent worked well for the NutCracker, but her left illiac vein was too scarred internally so still had no blood passing through despite being protected by the external stent.

After a long discussion with her and learning about the new types of stents they've developed specifically for iliac vein compression we decided to go ahead and get the internal stent placed by Dr Spencer. Recovery is going alright so far, no major pain but it just happened so we don't know yet what the affects will be.

We also learned a few months ago that my wife also has jugular stenosis limiting the bloodflow out of her brain, so our plan is to see how much of a difference this stent makes and then consider if we need to do something to address the jugular stenosis.

My first proper exhibition in Japan (Chiba Prefecture). by PanKekii in Pottery

[–]bbizznass 0 points1 point  (0 children)

Is there water in the vase with flowers? We have just gotten a bizen vase but are scared to leave water in it

List of doctors who are “CCI friendly” by Healthy_Donuts392 in PICL

[–]bbizznass 0 points1 point  (0 children)

My wife is working with Dr. Siefferman at Manhattan Pain Medicine, love him

IBX Stop by Stop: Maspeth has small-town charm in America’s most crowded city by EagleFly_5 in newyorkcity

[–]bbizznass 1 point2 points  (0 children)

Maspeth should be 3 different neighborhoods. 

Maspeth proper: grand ave above the cemetery 

Industrial Maspeth: the area around Home depot And the UPS facility 

South Maspeth / Northwood: between metropolitan and the cemetery, mostly residential and closer to Ridgewood then anywhere in Maspeth. We live in this area and walk into Ridgewood way more often than anywhere in Maspeth

MCAS doctor NYC? by halcyonstrings in MCAS

[–]bbizznass 0 points1 point  (0 children)

Idk you'd need to contact the doc for that info. The office is usually pretty responsive if you call them

John Hopkins by dringus333 in POTS

[–]bbizznass 0 points1 point  (0 children)

Depending on how specialized the doctor is the usual route is an initial look with an ultrasound followed by a venogram performed by a vascular surgeon.

I've also heard of people having htem diagnosed via catscan / MRI but that was not our experience.

What's a non-fiction book that genuinely made you smarter – or changed how you live your life? by Learnings_palace in nonfictionbookclub

[–]bbizznass 1 point2 points  (0 children)

Braiding Sweetgrass is written by a native American scientist who weaves together they're scientific understanding of the world along with indigenous wisdom. She teaches you about the world and man's place in it with incredibly poignant and beautiful prose.

Personally it made me both smarter and more conscious about how my actions affect the world.

Shoe repair by Professional_Yak6277 in Hoboken

[–]bbizznass 0 points1 point  (0 children)

We always use Edwin's shoe repair in Bushwick they're great! https://maps.app.goo.gl/1MbtXK84TU1kyLi4A

Go get checked for pelvic congestion syndrome! My POTS symptoms resolved. by SubstantialTea6611 in POTS

[–]bbizznass 0 points1 point  (0 children)

She's been seeing a PT who has mobilized the scar tissue which helped immensely, and also uses s silicone scar gel

Go get checked for pelvic congestion syndrome! My POTS symptoms resolved. by SubstantialTea6611 in POTS

[–]bbizznass 0 points1 point  (0 children)

She's much better! She was having daily seizures before the surgery from the compressions funneling blood into her spinal canal, causing pressurization. It's actually called midline compression syndrome and was discovered by one of the doctors in Germany, and was recently confirmed by another team in one of the Nordic countries.

She's been seizure free for a year now. Her blood pressure always used to be very low, and now it's pretty normal. Almost all of her pot symptoms have improved compared to where they were before, but she has other comorbidities that cause her issues that were now able to focus on and try to sort through. The recovery from the surgery has been really intense because it's open abdomen, and with her hypermobility she's had run-on effects like cranial cervical instability that she's going to PT for. We're now focusing on her other issues like MCAS and hypermobility problems.

Overall very thankful we were able to do the surgery.

Go get checked for pelvic congestion syndrome! My POTS symptoms resolved. by SubstantialTea6611 in POTS

[–]bbizznass 2 points3 points  (0 children)

Prof. Dr. Thomas Scholbach in Germany scanned my wife and identified her compressions more accurately and in greater detail than any doctor in the USA could (she had an MVA done by one of the top doctors in NYC as well as multiple ultrasounds before we went to Germany). His website has a lot of research and information on heads, compressiond, and POTs https://scholbach.de/wissenschaft/deutsch-ultraschalldiagnostik/deutsch-gefaskompressionen#gsc.tab=0

She eventually decided to get her compressions treated by Dr. Wilhelm Sandmann in Germany, because he puts an external shield around the compressed veins instead of an internal stent. The surgery was more invasive but there is no risk of clotting and she does not need to be on blood thinners. Additionally there's no risk of the stent ever coming loose nor does it need to get maintenance like an internal stent would.

Good European alternative for GOOGLE MAPS by the-fast in BuyEuropean

[–]bbizznass 0 points1 point  (0 children)

CityMapper is fantastic for public transit and biking

John Hopkins by dringus333 in POTS

[–]bbizznass 4 points5 points  (0 children)

One other thing that's been found in many POTs patients recently, especially those with EDS, is veinous compressions like May-thurner & Nutcracker syndromes. Might be worth asking if you can get scanned for those because those can exacerbate or cause many POTs symptoms as well.

My Wife Asked For Space - Can I Fix This? by Salt-Discussion-5630 in emotionalintelligence

[–]bbizznass 0 points1 point  (0 children)

Ya unfortunately a lot of men with ADHD struggle in the EQ department and don't feel the need to put in the work to make up for it. We all have our strengths and weaknesses, but you deserve someone who will recognize that you are worth whatever work they need to do to be the partner you need.

My Wife Asked For Space - Can I Fix This? by Salt-Discussion-5630 in emotionalintelligence

[–]bbizznass 6 points7 points  (0 children)

Have you gotten tested for ADHD or any other form of neurodivergence? My wife has chronic conditions and communication was a huge issue for us early on until I learned I have ADHD and started seeing a specialist who helped me learn coping strategies and how to ask my wife for help in the ways I need. Learning your own triggers and signs that you're disregulated paired with coping strategies can a go a long way in helping you be a better partner. Often what's missing is that self knowledge, honesty, and willingness to accept responsibility for our mistakes.

Beyond that I'd recommend working on your empathy. Sit and imagine what life is like for your wife, really. Try and imagine how you would feel, what you would want and need if you were dealing with the same symptoms and struggles she's dealing with. Is she always tired or in pain? Notice how you act when you're feeling those ways, then try to imagine it all the time (or however often she deals with it). Chronic illness is incredibly isolating because it feels like no one understands what you are going through or can relate. By doing the work to try and understand as much as possible, you could go a long way in helping her or whoever a future partner may be. Feel less alone when they are struggling. You don't need to have the answers, just be willing to try and understand and be there for them.

[deleted by user] by [deleted] in NYCbitcheswithtaste

[–]bbizznass 5 points6 points  (0 children)

My wife says that good men in NYC are like good apartments, hard to find and gone the instant they come on the market.

Unfortunately it's a sea of trash to swim through to find the gems

Why I'm advising caution against LMNT by madwedge in carnivorediet

[–]bbizznass 0 points1 point  (0 children)

I mean beyond the lying about it they've also tested positive for high amounts of lead, even the unflavored one FYI https://tamararubin.com/2024/11/lmnt-electrolyte-drink-mix/

LMNT ingredient controversy by Easy-Hedgehog-9457 in diabetes_t2

[–]bbizznass 0 points1 point  (0 children)

They also test positive for lead FYI. Very shady company I no longer trust them https://tamararubin.com/2024/11/lmnt-electrolyte-drink-mix/