Update and Lots of new aches and pains! - Hughes Syndrome A...

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Update and Lots of new aches and pains!

Debbweb01 profile image
19 Replies

Hi All my APS FRIENDS! Well it's Election Day Eve in America! IM PRAYING to The Good Lord that The USA first the right thing! Lol.... We must be a laughing stock to Europe??? Aside from that I had a successful knee surgery! Now after 10 days I'm first starting to feel pain??? Maybe cuz I have ants in my pants and need to sit still!!! Lol... On November 10th I'll be having throats Surgery! All thes surgeries have been done thru NYC Hospitals, including HOSPITAL FOR SPECIAL SURGERY! Wow what a hospital!!! Amazing!!! Very impressed! That's cuz the Health insurance plan I have now is the best and catered to all NYC HOSPITALS! UNFORTUNATELY due to our present Administration, My insurance company is throwing me out! I basically have only 2 maybe 3 choices and will go up to at least $1000 a month! That's almost double of what I'm paying now! I know Y'all won't approve of what I'm about to tell you, but I've had no choice! I've been stashing my meds for past 3 months, by taking it every other day except coomadin! I've been on Lovenox shots due to my surgery and have never felt better!!! My doc may keep me on it he said at first! Last time I saw him he mentioned to come in after my surgeries so I can get back on Warfarin??? Lol... He forgot and I shall duly REMIND HIM! The morning headaches are gone! Yay!!! I've had to stop The Plaquinil, due to extreme NIGHTMARES!!! I have Osteoporosis back again! Had it years ago and was put on Bonita and after one year I improved and was taken off! My Rheumatologist said that was a huge mistake and I'm back on , Fosomax! I'll start that after my throats surgery! I'm not sure what insurance company I can get, or if I may decide against all insurance accept a small hospital policy, if that's even available for me! Unfortunately I'm a year and 4 months away from Government Paid Medicare and my have to sell my car, which I've tried unsuccessfully, on Friday, in order to get health insurance! I have been so upset and crying, now I must take the Bull by the Horns and be who I am and fight for my rights! I refuse disability!!! As long as my prosthetic leg works, which by the way more bad news ~~~ My leg people told me I need whole new leg! The foot has worn down tremendously and I basically grew out of it! Being that my present insurance company is getting rid of me as of December 31st, of course they're doing everything in their power to let it drag on till I'm done!!! Therefor they just denied me my rights and refused a new leg! So I shall be at hi risk of falling being that I'm uneven! If I stand still, I'm like the LEANING TOWER OF PIZA, in Italy! I totally stumble so it's just another reason I can't stand still!!! Lol... I am putting in an appeal, but not sure I'll be in time! My leg people were busy, therefore they were in no rush like I begged them to put my request in a timely manor! I shall prevail and keep on trucking!!! It'll take lots more than The US Givernment to bring This Taurus The BULL Down!!! I'll fight tooth and nail for my rights as an American Citizen!!! Last time I needed a new Cover( Half a leg) & they denied that! I called my insurance company and told them if I fall and get hurt because they won't allow me a new cover, they'll not only be sued, but on every TV Station in America! Two days later I was approved!!! I may have to fight again! It's sad to have to fight for everything !!! You all may think I'm argumentative, but being born sick kind of makes me immune to all of this! I expect pain everyday of my life! It almost like I welcome the pain cuz then I know I'm ALIVE!!! Lol... A day without pain for me is a gift and one very rare! I appreciate every day pain or no pain and shall continue to fight for my God Given Rights and be great that I was lucky enough to be born in New York, USA! I have new neck pain extremely bad!!! Maybe it too shall go away soon! Maybe I slept funny I sure do hope so! Thank You All my special friends for continually supporting me and My Precious Sister Lynn, Nanny 23! We both have our crosses to bare as do all of you!!! GODSPEED TO ALL!!!

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Debbweb01 profile image
Debbweb01
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19 Replies
Lure2 profile image
Lure2

Woww..... thanks for that update. I have been thinking of you lately. Perhaps you know now when on Lovenox how it is to be well anticoagulated, at least for a while that is. You are a real fighter! You will manage because you are so positive with all your different troubles.

Good Luck on Thursday! GODSPEED!

A big Hug from Sweden and Kerstin

Debbweb01 profile image
Debbweb01 in reply to Lure2

Awe love u Kerstin! Hope u r well! I'm great since on Lovenox, but body aches are getting worse as I do have RA, my hands drop everything! I break lots of stuff lol... It's ok like I said I've felt with pain since birth, so it's all in a days eork! I'm so happy when I get a day or two without pain! Then I really accomplish lots of great things!!! GODSPEED

MaryF profile image
MaryFAdministrator

Keep on on going, I am sure things will get better for you, keep as well as you can. MaryF

Debbweb01 profile image
Debbweb01 in reply to MaryF

Thx Mary! I do hope u r feeling well! I missed y'all, but so busy with My Hubby and my poor stepson with Williams Syndrome just recently went blind in one eye! Poor kid, he cud get cornea transplant, but won't allow him to have eye surgery as for him it's documented dangerous!!!

MaryF profile image
MaryFAdministrator in reply to Debbweb01

Keep your spirits up! MaryF

AnnNY profile image
AnnNY

I don't know what your financial situation is but I do think you should talk to a Social Worker at the your local Department of Social Services. It may be the only rational choice you have is to apply for disability even if you don't want to. It took me a long time for me to really come to terms with the fact I was disabled. In New York Medicaid has some other programs even if you are not immediately eligible for Medicaid.

Here is a link:

health.ny.gov/health_care/m...

I think I would have hung in there with the plaquenil. Likely the nightmares would have gotten better after a little while. Sometimes I get nightmares for awhile and then they stop.

Glad you are getting your surgeries taken care of, but you have to have health care.

Debbweb01 profile image
Debbweb01 in reply to AnnNY

No honey Mr, Trump unfortunately came too late for me! As an individual in NY, I've researched and have only one choice which to me is a monopoly not a democracy! I'm happy to say I only have a year and one half of this till I become elegance for Medicare! That's old age insurance that's not free, but only about $300 a mont for us old folks!!! Lol... I've never felt better since I'm on Lovenox shots! Thank God for that! I've built up a nice stash towards next year already!!! Lol...

ebulfin profile image
ebulfin

It is a real shame that your treatment costs so much in the USA, I find the whole idea of paying extortionate premiums and even then the companies have the audacity to deny you further cover just because you are taking money out of their profits. President Obama wanted a free health service based on the UK National Health Service (NHS) but he was out-voted every step of the way.

Here in the UK I have all my medicines paid for, all operations paid for and all doctors and specialists paid for from the money I paid in when I was working. I know that the NHS has it's problems and that there are a lot of critics, but as far as I am concerned it is the fairest system available. I would probably run out of Insurance funding 4 to 5 months from the end of the year and have to purchase drugs at silly prices just to survive until the new financial year. I would not be able to take all that pressure, and we all know what stress can do to APS patients. I hope you find a new and fair Insurer soon so you can get at least one bit of your daily stress reduced.

Regards

Eddie

DannyBoy1 profile image
DannyBoy1 in reply to ebulfin

Eddie: I don't want to get into the weeds of politics but I live here, am a news junkie and want to correct one misconception. President Obama got exactly what he asked for and not "outvoted every step of the way." Our congress voted to approve his 1,200 page plan without exception and without review! The failure of this medical program is due to poor planning and anticipation of need but not poor execution. The Congressional fight was against his program after it was obvious there were problems with his plan. This thing is a mess and folks like Debbweb01 are suffering from corporate greed and that poor planning.

ebulfin profile image
ebulfin in reply to DannyBoy1

Thanks for the information, it is good that we have forums like this which can debunk misconceptions and poorly related UK news items where USA politics does seem to take a back seat in favour of "celebrity" news. Thank you for putting me right on just what is/has put the brakes on with the plan.

GinaD profile image
GinaD

The medical insurance industry takes up a huge chunk of the US economy. It would be very bad for our country's financial situation for that entire industry to go away.

GinaD profile image
GinaD

And so, I believe we already Recognize that the UK system is much cheaper and fairer than the US system ( actually to call this a "system" is unfair as its birth and growth were unintended consequences of the depression and World War II. )And, the Obama care attempt to make the US system more fair and accessible has not accomplished all we hoped. But I'm not sure if it is possible for us to reform our health system in a positive manner without doing a severe blow to our financial state. We have middle man who take a huge share of our healthcare costs. But those middle men have become so big. How do we get rid of the middle men?

Debbweb01 profile image
Debbweb01 in reply to GinaD

Lol... DONALD TRUMP!!! Let's Pray that the Americans have spoken thru our votes! We r sick of the corruption and needed a regular person to fight for us!!! God Bless You and The USA!!!

GinaD profile image
GinaD

Yeah, affordable, reasonable, and ever improving health care requires a magic wand. Unfortunately, magic wands are in short supply.

GinaD profile image
GinaD

And Deb, I am sorry to hear of your continuing struggles. At least you are in New York and not in West Virginia.

Debbweb01 profile image
Debbweb01 in reply to GinaD

Yes Gina, all I know is I only have one choice here in NY! Yes I'm proud and Glad to be a New Yorker! I these past 2 Surgeries have been in NYC, due to the healthcare I have now! As far as my leg goes it's time for me to threaten Oxford! My poor stump is raw and as I walk my bone shifts and cracks! Plus I fall if I Stand still, therefore the ants in my pants are worse! I rarely sit still, don't know how, but with this leg I really can't stand still! Lol...

Elfie1 profile image
Elfie1

Hi Debbie I hope you get things sorted soon. You know,we don't know how lucky we are in Britain to have a NHS.service,but people still grumble .All the best to you ,hope everything goes well with the surgery. Elfie

Debbweb01 profile image
Debbweb01

I hope all is well for u my dear! I really have seen and heard about NHS and hope there's a better answer for My fellow Brits!!! I think of all of you often with prayers and deep comradeship!!! GODSPEED!!!

Debbweb01 profile image
Debbweb01

Oh sorry had no idea they were against the rules! So sorry, thought ok due to it being about healthcare!!! Omg so sorry! I rock enough boats!!! Lol... I'm such a human advocate, it's terrible for me at times cuz I put everyone else first!

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