I have APS and AIP (Porphyria) and I'm on a good handful of meds for medical and mental health things. Has ANYONE heard of someone dancing with both of these beauty queens at once?? I just don't know how I keep getting all the good luck.
My behavior changes, mood changes, visual "disturbances", crushing pain in my trunk and limbs, and my soul sucking fatigue may now have a cause, but *I* still have no relief
I am having a very very very very hard time emotionally and mentally coping with TWO disorders that have essentially no treatment let alone cure. I just can tame the torture down a bit. It is hard to be on one's own and face I guess. Sorry for babbling but seriously if anyone has both of these, PLEASE let me know somehow. If I can post a little never used side email as a point of contact that is safe please let me know and I will.
Melody
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Jmkeefe
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I think you’re very courageous posting how you are really feeling. It’s unsurprising that you feel as you do. You also know there aren’t any magical cures any time soon.
You say you are on medication for both physical and mental health. But, what I would highly recommend is to speak with a psychotherapist. There are many different kinds of therapies but I would recommend one particular kind that is based solely on talking.
No one can magically take away your medical condition, but you can find a way of living with them. You can be happy again. You can have meaningful relationships with others in your life.
This is a space where you can say how you are feeling. I wonder whether there are any local support groups near you.
Feel free to use this space here to talk. I would also ask your doctor whether there is any availability for therapy. In the UK, there are free or low cost talking therapies.
The most important thing is that you don’t feel you are alone. You’re not!
I just about jumped out of my chair when I saw someone read my post AND, AND, AND they replied!
I'm in the worst possible location for medical care and the worst possible life situation to care for anything beyond a paper cut. I have a CBT therapist I see 45 min a week that has ZERO idea what either condition is, what is like living with a family depending on you, what it is like living pennie to pennie, and who hasn't a clue what living with chronic illness (let alone two that carry fatigue) do to your inner cheerleader.
There are no support groups for AA, NA, DV, or ANY of the TONS of other community meetings that would make a ranching town of 500, that is a good 2 hours from civilization, worth slowin' down for as you drive by. :/
And yes, in about 4 months when I can next afford to get to a specialists they'd better have some dang good ideas for me. LOL
You know I'm being funny so I dont fall apart, yes? Did that once today already, burned too many calories. Don't wanna do that again.
I'm screaming for help but my lungs are out of air. But it sounded like you said I could come here and learn and chat and kind of hang out? Is there one on this site for friendship of page members or is it all medical?
I’m sorry you aren’t near helpful resources. Are you in the US?
While CBT is often helpful, I was thinking more of psychoanalytic. But, if that’s impossible where you live - and I do understand the financial aspects - then we need to find other resources.
Here is a very good place to be. Although this is purely for medical issues, you can develop genuine friendships. These are developed through posting and sharing information and of course, support.
So, please do use this space. The posts aren’t just about medical information, but genuine support and friendship.
Do you have support from family and friends? Sometimes, we can unburdened our with “strangers” than with family or friends. Here, we have something in common: an understanding which is difficult for family and friends to understand.
Yes, un/fortunately in the USA. Poverty is my middle and last name. I was raised in a very unusual way (my dad had mental health issues AND LATER IN LIFE developed AIP for good measure!) so my social skills are about zero. I stick my foot in my mouth about every ohter sentence.
If y'all can forgive me my ignorance and cluelessness of how to start/keep friendships even though you are a few months shy of 50 and have 4 kids, I'm your girl. LOL
Hi there Jm, I’m so sorry to read about your situation. I experienced something a little bit similar, in that my diagnosis (a brain clot and APS) was in the midst of the Covid lockdown. I live on my own, had no one to talk to and none of the normal ‘distractions’ available to me. I can remember standing in my kitchen screaming, with no-one to hear. The first person to touch me in months was a nurse drawing blood. I had all my diagnosis over the phone some of it from doctors I had never met.
My sister, bless her, talked me through a lot of this over the phone, sending me out to do treats - some chocolates with my supermarket shop, walking to the woods to look at bluebells. These helped me remember there are small joys in life. And turn the corner a little.
I don’t know if there is someone in your life who can help you like this if not friends or family, perhaps at church (even if you aren’t a believer they will normally at least give you a safe space to talk). I do agree with lupus-support that it sounds like a psychologist may help a little - you can access this on line now, so don’t have to travel.
I’m not going to give you lots of do this and all will be cured, we all live with a life long condition and many with other illnesses too, but it is possible to find the things you enjoy and regain your pleasure and balance.
PS, the day after the PM announced bubbles, my sister swept down from 200 miles away and left her family to bubble with me while they did more (and more tests) She had to walk around central London for hours as they wouldn’t allow you to be accompanied into hospitals. I’ll never forget how much she was there for me when I really needed it.
Thank you for the sweet reply and I am so so sorry you had to face such a scary situation alone during such another scary situation like a dang Pandemic. I don't even have all my Drs and tests and dx lined up yet so having my feet under me might take a week or two but I hear what you very sweet and experience voices are saying about taking a deep breath and letting it out slowly because this is no sprint. <3
I was once triple positive with APS. Then a well-meaning but 'quite-the-nag' friend nagged me into going on an Atkins Diet. This of course meant going gluten free. And my health and energy levels soared within days and weeks! So, I discovered I have gluten sensitivity. Since then I have become very interested in the relationship between diet and autoimmune issues, which is covered by functional medicine doctors. You might see if a FM doc is near you.
I can cut gluten but I can't cut carbs. The other problem is I'm slightly on the autism spectrum (very slightly, compared to my kiddos) but enough to where eating certain textures, colors, smells, foods that touch, foods that feel a certain way in my stomach TOTALLY FREAK ME OUT and I can't eat/keep them down. I'm trying, i really am, but maaaaaaaaaan is it slow going
Go slow to go fast … keep trying …. Your attitude and dark humor and willingness to be vulnerable -all very impressive tools to work through this passage. I’d recommend reading Living with APS, and Dr. Hughes’ books. Lots of good info. And APS (combined with chronic symptomology) does qualify for disability …. Especially with your symptomology. And there are some good non-profits who are committed to helping folks like you worm their way through the system. Sending hugs … stay strong … since there isn’t a true option that I have found …. Right?!? 😊
I've never lived in a town large enough to even have HEARD of an FM doc. LOL remember, the good ol USA doesn't share its paltry bounty of medical knowledge around the country. It likes to keep it tucked tightly in a few large cities most of us can't afford to get to, stay in, or be treatead at. However, I CAN research the books, so thank you for that lead
I am so sorry to hear what you are going through☔️. 😢
I have thought of any suggestions you might be able to do. My latest thoughts because of your location would be to print out the article posted here detailing what APS or Hughes really is and keep it with you. Also, include a physician and phone number for the doctor you finally get to see —they might have questions. I assume you are out west somewhere but when you finally get to see a doctor ask and see if he will write a prescription for a portable PTR machine with strips. Considering your rural location they might not be opposed to doing that for you
I am on the east coast but several in the group have used the University of Michigan ( Dr Jason Knight) or his associate. Your future Doctor might be reassured to have a fellow professional to call if they have questions.
Everyone here struggles with care. It is a rare disease that is in trials but so far no cures; that does not make us the most popular bunch . I found that taking the time to watch You Tube with Dr Hughes and others helped me realize how difficult this all can be
I hope this is helpful We are all so different! What works for one of us may not be available or work for another. Hopefully, you will be able to manage and find support with an understanding physician
Hugs! 💕
The machine you want is a Coaguchek S for monitoring your PT INR at home
Thank you, BeachHaven123. I'm in the process of trying to get a printer for home. As soon as I do I'll be following through on exactly what you suggested. And I have to find a Dr. with some skizilz to decide if I should stay on Eliquis since I've been on it a decade, or if I should go back to Warfarin like most of everyone else. (I could NEVER get my INR right so they just tossed me on Eliquis)
I too, have been diagnosed with APS and AIP Porphyria. I was first diagnosed with Porphyria and took Panhematin treatments, which made me feel wonderful. I could not continue after I developed a blood clot in my arm at the infusion site, though.
A few years later the APS diagnosis came about after I began having bouts with high blood pressure. The Dr. put me on meds for that and I ended up in the hospital when the medicine spiked my blood pressure even higher. I told them that I had Porphyria, (which they knew nothing about) and I was told that I was most likely having a heart attack. They ran every test imaginable and told me that my heart was perfect. By accident, though, with my hospital stay came treatment with blood thinners, which made my blood pressure normal. This revelation made my doctor look in a new direction, thus the triple postive APS diagnosis.
It is quite a struggle and some days you feel that you can't keep it together. Some days I need a good cry and then I go through periods where I just find my best coping is by trying to forget all about it and live a bit in denial and keep myself busy in other ways. I always take my meds, but I just need a mental break from thinking about it constantly. I know that this is impossible on days when you have attacks and you feel like you are dying, though.
I don't have any earth shattering advice, I just wanted to let you know that there is another person out there that knows what you are going through and shares your confusion and frustration.
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I'm new here - and glad I'm probably not crazy afterall
CRPS/RSD--Headaches, Ocular migraines, back of head feels squeezed!
Electric blankets
