Update: just done now with all of thi... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Update: just done now with all of this, too much overwhelming info!!!


Hi Maru, Kirstin, Not so fab and all my friends in this forum! I just wanted to update you all and say hi how are you? I've gone to enuf docs to last a lifetime! My last INR was 5!!! I never felt so energetic! Of course it NEVER goes high! I've found out I have RA/Rheumatoid arthritis and Sojerns too! I must take a break from most docs! It's too much too fast for me to handle, as I'm just learning how to deal with my hubby having ALZHEIMERS! I just go to Hemotologist and have no plans on going anywhere else for now! I can't afford Dr. ERKAN at this time! He's asked me to send him my sisters test results and I must send him my Sojerns DX from my eye doc, who happened to be amazingly well versed on APS! Shocking, but he's operated on me twice with complications, but excellent results in the end! It's been 5 months and I'm still not regulated on Warfarin??? I expected it! Nothing is ever easy for me! I'm just going into my shutdown mode! I must for the sake of my mental health! We here in USA having it rough with the lousy Candidates we have running for President! Don't see and good from any of them especially with the cost of our healthcare premiums on the rise! I figured how much a month I pay for insurance! Shockingly sad that I pay $1000 a month, plus co-payments! I also have a mentally retarded stepson that I've kept at home and have taken care of for 35 years! He's mine!!! I just love him! The government has cut back $200 a month for him! I'm just able to barley eat let alone pay Dr. ERKAN $650 a visit, pluc $120 traveling to NYC for parking and gas and copay too! I'm just venting! I just have no help from anyone, but a couple of friends who send food for us! It's just so hard to accept when you've been there for everyone and when it's your time to have a real need for some help or someone to just come by and say I'll give u a hand or make u a cup of tea! I just can't wait to join my beloved son in heaven! I'm having a dark moment and this too shall pass and I'll wake up tomorrow and just keep on Trukin!!! I just hope and pray all of my friends on this AMAZING forum are well and keeping up with good health and welfare!!! God Bless You All! Miss being on here!!! GODSPEED

7 Replies

Have you applied for disability? Are you still working. You can call your local Dept for the Aging and talk to a Social Worker. Also the Rhematology Dept at HSS has social workers. They mostly talk to Medicaid patients, but I expect you can talk to them, as well.

Social Workers can tell you what help is available.

You have so much going on. It is no wonder that you are down. Usually, the first appointment is the most expensive, so perhaps the next one won't be as expensive to see Dr. Erkan.

Anyway, I live in upstate NY, so I know about the journey to HSS. Now I live across the street from a bus into the Port Authority and take cabs crosstown. It is still a trying trip and I have two legs that usually work!

Good luck with everything.

Debbweb01 in reply to AnnNY

Awe thx for ur fast response! It always helps wen someone reaches out!!! Yes I still do my homecare work! I think if I stopped caring for my patients I'd go crazy! I'm a giver and a nurturer! I love helping others, but it's hard when no one reaches back out to you! I'm told I have too many expectations! That's a cop out by the person saying it! I was there for the world and I'm so saddened to feel alone! Really alone! Sleeping with one eye opened because my hubby wakes up and call the POLICE @ 4:30 am or he's going out to get milk and bread at 3.30am! I never ask for help, I feel if people are so damn stupid, selfish and greedy, that if they CAN' T see I need hep, I'm certainly not going to ask and get that dreaded "No." I'm sorry I'm just tired of it all!!! Yes I've put a call into the VA/Veterans Administration for help and must go thru all the red tape to get any help! It's ok I'll snap out it! God Bless you for ur quick response!!!

Bless you.

You have so much in your life going on that you can't c the end of it.

With your husband having Alzheimer's that wld b enuf for anyone. There is help out there but you need strength to find it.

If u were in England there are a lot of us wanting to give you a cup of tea n a hug.

Chin up your a very strong person to have coped with what you have so far.

Best wishes n regards Diane

Hallo there,

If there were more people like you on our Earth, God would be pleased with us human beings.

Yes I agree with the others of course. You are doing a great job. You have been diagnosed with at least two autoimmun conditions and also reached the INR of 5.0. Now you are getting somewhere. You have seen one of the best Specialists in your part of the US and all this you have done yourself in an exceptionally fasts time!!

You have also helped your sister to have her APS diagnosed! Furthermore you have written a lot of positive remarks on this site to help others!

God bless You Deb!



Hi, you have very difficult circumstances, do listen to any helpful advice from anybody in the USA and apply for anything you can, including help from charities if it is out there. Now is the time to ask for that help, and also reach out to any friends to make sure you have some 'time off from worries' all the best over the pond. MaryF

Good Morning my friends! Good afternoon in Uk! Lol... Last night I slept 8 hours straight! I havnt done that in years! It had been a tough week as far as sleeping, due to sleeping with one eye opened! I decided to sleep in my sons Baby room! Well he must've been watching over me! The sleep was needed! I woke if feeling refreshed and just about ready to cope with everything going on in my life! Reading your caring responses has done a world of good for me! My sister has also been a big help for me by sorting through my medical options with me! I'm greatful to have her to listen to me! Although we are very different in some things, we share the same genes and have many things alike! I'm just glad she will b able to retire in June or September! I'm getting her to see my local Hemotologist for the repeat bloodwork so she can get on the road to feeling better too! Unfortunately we both lost our beloved Sons too, we r in a club we don't want to belong in! We understand each other with that loss, I'm just sorry we have to have that in common too! Thank you all for responding so quickly! As usual you've all sent me great strength with ur caring word from across the pond!!! Lol... I just love that saying, it kinda feels like we r not that far from each other at all! I wish all on this forum good health, PEACE From within, and Happiness!!! Thank You All again! Godspeed!!!

Its just a small hint. Not APS related, but Alz caretaker related. (Alzheimmers is strong in my family. Gulp.) I did not live with my Mom when she was starting that Big A decline, but I did live with her and my grandmother when grandmother began her Alz journey. We found that putting bells on door knobs (the best are those that hang on a long, braided rope; popular in the hippie 60s days.) helped tremendously! The bells were loud enough to attract our attention should she start to wander (I'm told that a lot of health professionals use the word "elope" now.) I don't know if this hint will work for you, but I thought I'd share. (I continue to have bells on my door up to today; no one in my household is prone to elope, but it is a great low tech security alarm. And my dog has learned to nose the bell for a good ring to signal her need to go outside.If you decide to try this and you need to shade the reason for using it so your husband will not be too upset, tell him its an idea you got for protecting the house against home invaders.)

Hope this helps you get some more rest.


Also, every hospice chapter is different, but our local chapter has certified my neighbor's Mom as having terminal dementia. This means my neighbor can check her Mom into hospice for a few days every month or so so that she, the daughter, can take a break. Its called "respite care." And its covered by Medicare! This has really been a

God-send for my neighbor; her Mom thinks shes going to a spa for a few days, and my friend gets to take quickies to the beach, clean the house, get the garden in, or just hibernate with a book, her TV and pizza delivery for a few days. You might see if similar respite care is available in your neck of the woods.


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