Inflammation Flare

[GirlfromTennessee]

I just went through a major flare that has lasted over 8 months!!!! Inflammation has consumed my whole body. Fatigue, swelling, brain fog, forgetful & all over pain etc. I have had to retire from my job. I’m just not able to do my job as well as I’ve needed to. I’m a bookkeeper & the brain fog as well as being forgetful, I just feel kinda incompetent. Has anyone received disability benefits from having APS? My job was 11 years strong but I didn’t have any type of retirement benefits. It’s all I can do just to keep my medical paid because as I said the last 8 months has caused many Dr visits along with tests & steroid shots. Just didn’t know if I should even apply for any type of benefit.

[lupus-support1 Administrator]

So very sorry to read this and I hope you do apply for benefits.

I am sorry I didn’t know anything about US benefits.

With good wishes,

Ros

[Lure2]

Hi,

I have a read a little from your earlier questions here.

I wonder if you now have a Specialist as that is necessary to have. You have also most certainly too low INR and the Dr decides how much Warfarin you should take. He will reduce the dose to suddenly and too much as they do not understand how Warfarin works with APS and most of us.

As a matter of fact I believe you should not perhaps need benefits and have so bad symptoms from your APS if you could get to a Specialist who dares to give you a higher therapeutic INR level. When you were at an INR of 5.0 you felt wonderful (!). That says everything.

[Lure2 in reply to Lure2]

You have written this 3 years ago (that you had an INR of 5.0 and felt WONDERFUL). Your Dr wanted you to be at an INR of 2.5 those days. You have the same Dr? I wonder.

[MaryF Administrator]

Please do apply for benefits, do you have a disability advice centre? We have some here in the UK where you queue up to get advice. I hope you feel better soon. MaryF

[KellyInTexas Administrator]

Hello there, fellow southern Belle,

Sorry to hear you’ve had the wind taken out of your sails.

- I found a link , but it might be helpful to make an appointment with your local social security office and bring the downloaded application in, along with pertinent documents, and any thing else required.

[KellyInTexas Administrator]

ssa.gov/benefits/disability/

[GinaD]

I had fatigue and inflammation flairs for decades --all my life actually. Until I discovered by accident that I have a gluten allergy. 40 years of eating breads, cakes, sauces all made with wheat flour and I had no idea I was slowly poisoning myself! In the short term, do contact your specialist about maintaining a therapeutic dose. In the long term, you might investigate an elimination diet. When one eliminates an allergen from one's diet for a week or so, ands then reintroduce, you will know almost immediately! This might be TMI, but last month I was in a mall eating area. I chomped down on some delicious Hawaiian Chicken that once upon a time had not bedn made with wheat flour. I surmise they have a new chef and I should have asked if it was still gluten free. 2 bites without ANY warning from my stomach in the form of nausea and I vomited right there on my table, in front of dozens of people. A food I had once eaten daily. Now that my body knows how much that ingredient screws up my immune system my stomach just "kick that **** out! Immediately! Get it out. Now! We will NOT process this crap anymore!" And since going gluten free in 2001 all my APS markers are now normal. I stay symptom free on a very low INR with warfarin and at age 67 I am healthier than I was at 17. Again, in short term, work with doctors to find and stay on your therapeutic dosage. But see if you can also work with a dietician or a functional medicine doc who can help establish if you have a food allergy.

[hihannula in reply to GinaD]

Hi Gina. I’m so happy to hear, just by removing gluten, you feel very good. Did you get nauseated and vomit eating gluten before cutting it out of your diet, and just didn’t know what was making you sick?

[GinaD]

The nausea dated from my early to mid childhood -2-11. ( My physician father and his partners tried to convince my mother thst I had Celiac. She did not believe that was possible. They divorced.) I was allowed to walk home for lunch and take extra time to eat because if i ate quickly I would vomit. The nausea went away and I moved into fatigue and fainting from 12-30. I often had lupus like symptoms which I was told was mononucleosis. 7 cases of mono over 14 years. Then APS symptoms from age 50 until dx at age 55. Fatigue and quasi lupus flairs continued until accidentally going gluten fred in 2001.