#rheumatoid arthritis

So disappointing

Hey everyone! I have a question for you all.

For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.

Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?

I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.

Sometimes we hear stories about the really crazy things docs say to people. We thought we would share some of these, and ask you for yours. Because sometimes all you can do is shake your head and laugh…. And then find a new doctor! ~~

“You can’t have AS because in all my years practicing, I’ve never diagnosed anyone with AS.”
“My Mom is having a bad time right now. I asked her Dr. If it could be AS. He said she doesn’t have the bamboo back so she doesn’t have AS.” - (posted on our page just today)
OBGYN: “Obviously I can’t have anyone in my practice with spondylitis….”
Rheum to just diagnosed patient: “You have AS. There is nothing you can do except take medication and accept that it will probably get worse.”
“Doctor: You have pink-eye. Me: It doesn’t feel like pink-eye, it feels like someone is stabbing my eye with a hat pin. Doctor: it’s pink eye - I know what I’m talking about, I’m a doctor. (Hint: it wasn’t pink eye - anyone with AS knows what it was)”
#Truestory

I was recently yelled at by a man driving by as I was walking into a Starbucks after parking in a handicap spot. “Liar! Liar!” My first thought was “you weenie come back and say that to my face!” Then the shame set in. For awhile I felt guilty of…something. I know I’m sick but I know I don’t look sick, so maybe I don’t deserve my placard? It’s confusing and I understand. But then I reminded myself that 96% of chronic illnesses are invisible. Just because I look fine doesn’t mean my illness goes away or isn’t serious enough to be disabling. It’s not me that’s somehow confusing or misleading, it’s society and our expectations and stereotypes. Sick doesn’t have a look and neither does disabled. This idea that to be valid your illness or disability must be visible is ludicrous when you learn how many people are suffering from something unseen. Society needs a major reform in many ways, but especially with respect to its treatment and expectations of chronically ill and disabled people. What we really need is to just stop being so dang judgmental in general! Was it ever any of his business where I parked or if I “deserved” my license plate? No sir! All that I ask of people at this point isn’t even kindness, just neutrality or even indifference! Let me be! Can I just get my chai in peace?!

Lethargic & lazy and all I could see was a future of getting larger, lazier & less healthy. I saw a future that I wanted no part of. So I made a single change to my daily routine.

That one change, changed everything! It helped me reduce the amount of sugar & fat I was eating, improved my digestion, calmed my aches & increased my energy. Now at 48 I can honestly say that I’m in the best shape of my life…and getting better!

You may try to destroy me but you will fail!

Today I add Rheumatoid Arthritis to my repertoire of challenges.

It’s ok to be blue sometimes. It’s ok to be fearful of what lies ahead. It’s ok to shut down every now and then. Just don’t get stuck there. Take some time then get up, get dressed and kick some ass!

“Keep your face always towards the sunshine, and the shadows will fall behind you."—M. B. Whitman

I’m still here. Still kicking ass and taking names! So many things have tried to destroy me and they have all failed. This new challenge will be no different. I am a warrior!

Taking daily vitamin D supplements — or a combination of vitamin D and omega-3 fish oil — appears to carry a lower risk of developing autoimmune disease, with a more pronounced effect after two years, finds a trial of older US adults published by The BMJ. 

The researchers say the clinical importance of these findings is high, “given that these are well-tolerated, non-toxic supplements, and that there are no other known effective therapies to reduce rates of autoimmune diseases.” 

Autoimmune disease happens when the body’s natural defense system mistakenly attacks normal cells. Common conditions include rheumatoid arthritis, psoriasis, and thyroid diseases, which increase with age, particularly among women. 

Researchers set out to test the effects of vitamin D and omega-3 fish oil supplements on rates of autoimmune diseases in 25,871 US adults. 

Autoimmune disease was reduced by 22% in those who took the increased levels of Vitamin D with or without fish oil. And those that only took fish oil supplements saw disease decline of 15%. More research is needed to better understand the effects of dietary supplements on autoimmune disease, like lupus.

Zinc supplementation may exacerbate rheumatoid arthritis (RA), new laboratory data suggest.

In monocytes from rheumatoid arthritis patients, plasma zinc concentrations and Zip8 expression were increased, and Zip8 expression correlated with more severe disease. Thus, inhibiting zinc influx into monocytes and macrophages could prevent excessive inflammatory responses that occur in diseases such as rheumatoid arthritis – the researchers concluded.

Fatty fish, for the fans of seafood, is nothing short of a blessing – it is the perfect combination of health and flavor coming together to tickle the taste buds while nourishing the body at the same time. Some of the healthiest varieties of fatty fish, like salmon, sardines, and mackerel, are rich sources of omega-3 fatty acids, proteins, vitamin D, and B6. And according to new research, the omega-3s found in fish like salmon could be the key to a lower risk of potentially fatal heart problems.

Yesterday was National Rheumatoid Arthritis Awareness Day. It’s a bit of a pointless holiday, and I didn’t even know it existed until about 3 hours ago - I’m guessing due to the fact that the Arthritis Foundation is shit, has a 1 star rating on Charity Navigator, and has been accused of misusing funds in the past. So….they probably haven’t had time to roll out an advertising campaign.

In any case, if you didn’t know, RA is an autoimmune disease in which the body’s immune system is a worthless idiot and attacks your body’s own soft and joint tissues, and can potentially render them useless through damage and deterioration.

I have RA. But I am lucky. My RA was diagnosed very early and I had it treated very aggressively.

I am also lucky because I have insurance that helps offset the cost of my revoltingly, ridiculously, disgustingly expensive medication. One month of Enbrel costs anywhere between $3,400 and $3,800. See?

It’s such an expensive medication that I actually have to use two insurance plans to afford it. Which means, if I did not have insurance, I’d be paying approximately $45,000 per year simply to stay alive.

And that is for justone of my medications, as you can tell from the above photo, where I’ve blocked out all the other medications I am also required to take to stay alive. Paying for Enbrel out of pocket would leave me unable to afford rent, food, or clothing - other things which are also required to stay alive.

Though I am currently fortunate enough to have a job that provides me with healthcare, I’ve been without insurance in the past. Back before the Affordable Care Act, I was unable to stay on my parents’ plan when I graduated and then was constantly denied coverage due to my pre-existing conditions. I basically roamed around LA, terrified of getting into a catastrophic accident while simultaneously attempting to treat pneumonia in the back of a CVS.

Obamacare is not without its flaws, I acknowledge that. But if your garbage disposal is broken, you don’t burn down your house and start over - you fix the fucking garbage disposal. So in honor of National RA Awareness Day, which is, as we’ve established, a real thing - please consider writing or calling your representatives (especially Paul Ryan) and telling them that repealing ACA without a replacement would be disastrous. It is important, and saving lives, and making it so people don’t have to choose between bankruptcy or having their immune systems kill their own bodies.

.

Contact Your Representatives: http://www.house.gov/representatives/find/

Contact Your Senators: https://www.senate.gov/senators/contact/

Contact Paul Ryan: https://paulryan.house.gov/contact/

Dear husband,

I’m sorry that I was naive enough to think when we married that my health issues would be temporary. Over these past eleven years, they’ve multiplied and they’ve crept into every corner of our lives. They affect everything. What I’m capable of is very limited, and I’m sorry that I’m not the wife I know you deserve.

I’m sorry that you’re now my carer. I’m sorry that your dream of being a doctor was shattered last year during a health scare that still continues. I feel responsible for you giving up on your medical career because you were left paralyzed with fear for me. Medical texts may be interesting, but when you’re sitting in the waiting room of a neurologist’s office and waiting with MRI scans of your wife’s brain, things change.

I’m sorry that the threat of multiple sclerosis will be hanging over our heads for the rest of our lives, or until it gets diagnosed.

I’m sorry that I told you your idea of becoming a researcher through doing more degrees was unreasonable and not feasible. I said it in frustration and out of fear, and you’ve since given up that idea too. I’ve suggested since that we move an hour or more away to be nearer the university so I can support you, but you refuse. You say moving isn’t a good idea for me. I know you’re right, but it just makes me feel more of a failure for acknowledging it. I’m 29 and still incapable of change. This is not the life I expected. I wanted to be so much more than this. I feel like I’m taking so many things away from you.

Thank you for looking after me every day, for taking me swimming and for walks, for taking me on exposure therapy outings to cafes. Thank you for rubbing my legs when they’re sore and for making dinner all the time. Thank you for always telling you love me and you wouldn’t change a thing. Thank you for telling me that you’re happy the way we are.

I pray that our future will see me become stronger, more resilient, more independent. I pray that I can face anything that life throws at me. And I hope that you will continue to be there for me, my one constant, and find your own way in the world. When you find something you’d love to do this time, I hope you’ll chase after it even if I don’t adapt well to it.

Thank you. I’m sorry.