Want to get back to living!: Hi, my name is Cindy... - PMRGCAuk

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Want to get back to living!


Hi, my name is Cindy. My first post here. I've been looking and ....then I go away. To find anyone out there that knows what I'm going through is at once uplifting, and then very sad that there are so many without relief. I hope to share my story soon. I have new insurance starting soon that I selected based on the Dr I wanted to see for my hypothyroidism. I experienced sudden blindness (both eyes) in the fall of 2016 that lasted for approximately 12 hours. I say approx. because I woke up blind. I never knew there were so many corners in my room as I felt my way about, trying to get out! The blindness I had was bright, intense white. Not dark. This was the beginning of a journey of learning about about GCA. I know that the vise that's on my head is not a simple muscular headache! One Dr actually told me to rub my temples for relief! Anyway, I hope I can add positive experiences along with some laughter, my pain reliever of choice. So, Hi. Btw, anyone also have visible CMs or Arterial Venous Malformations/Capillary Malformations? My family's AVM/CM gene is passed on through female progeny only. This past week has been one of the worst for me. The pain was so so intense. My family and friends are great but they don't know how frustrating and painful this is for me and quite frankly I hide it from them. I live over 1500 mile away. Love to you all!!!

16 Replies

Welcome. I am sorry that you are going through this, but believe me you are in the right place! Found the site in early December; the "experts" that frequent it are a GODSEND!

Welcome to the family, Cindy! I, too, am so sorry that you are going through this. But, oh my on losing your vision! How frightening that must have been and what a gift that it returned! I also try to put on the ‘good face’ and not expose everyone in my life to the hardships of this illness. You’ll find this forum is a great place to vent. We welcome it. And I think you may find that the need to vent will decrease as you find that you aren’t so alone — we, too, are walking the same path. Some faster than others, and some take little detours, but we’re on the same journey.

Full confession: i was with my best friend in her home last night and she asked how it was going. And continued to ask questions. I really opened up and explained how difficult it is. We both ended up crying I was grateful that she really wanted to know and she was grateful that I ‘let her in’. It wouldn’t have happened if we hadn’t have been face to face. And it probably won’t happen again like that as I too would rather not have her worry. (And I worry about talking too much sick talk). But if you ever find yourself in that situation, think about opening up a bit. In the meantine, ask your questions, vent, participate, or just hang in the shadows.

I’ll let the experts ‘Aunties’ address your pain. They’ll probably want to know a bit more on your doseage history, etc. i don’t feel qualified to discuss it. But I did want to welcome you to the family!

Insight329 what a wonderful response.

Thank you, yogabonnie. This forum has helped me so much that if I can make someone feel welcome (and share an experience), it’s all good.

DorsetLadyPMRGCAuk volunteer

Hi Cindy,

And welcome as others have said. So sorry to hear you are in such a bad way at the moment, all I can say as someone who has got through the journey it does get better, and like you (and others) I believe laughter can be the best medicine. Although some days laughter does seem a long way away.

I know how frightening the loss of sight is - my right eye was lost pre diagnosis unfortunately never to return.

As Insight says a bit more information re dosage, diagnosis date, symptoms etc might help us to give you more help. Sorry can’t help on the CM/AVM front , but I know a lady who probably will, hopefully she be along idc.

Friends and family no matter how supportive they are really don’t understand what you’re going through, so please, now you've made contact, keep in contact. We all understand, many have been where you are, and are only too willing to help.

If you want to read any of my posts - particularly “Info for new patients” just tap my name above and it will take you to my profile - you can then just scroll through posts.

So sorry you experiencing this illness. Stay plugged in here for people to commiserate. People who don’t walk this walk can’t get because we look so good!

Insight329 in reply to Sandy1947

So true! I sometimes wish we had a ‘mood ring’ chip where people could look at it and see how ill were really are. (Remember mood rings from the ahhhh 1970’s? I think I remember if you put the ring on and it turned to black it meant that you were angry.)

Sandy1947 in reply to Insight329

No mood rings. Just need to share with people who get it otherwise we look like complainers!

Cindy688 in reply to Insight329

Yes I do remember. Lol. I still have it but it won't change colors anymore! Maybe there is some trick to rejuvenate it. Thank you for your reply!


Welcome from me too - several people have crept out of hiding recently!

I don't know anything much about CV/AVM - although I assume since you say AVM you have the version that does cause problems? Do the doctors think the GCA causes problems with the CV/AVM?

Cindy688 in reply to PMRpro

If you have CMs , you're automatically assumed at risk for AVMs. My nieces have several CMs. One niece was born with a bulge on her calf where quite a few CMs were and the leg grew to be almost twice the size of her 'regular' leg. This condition is quite rare. She's beautiful and has two beautiful little girls. They also have CMs. In my family, the AVM/CM gene is only carried through the females. This was a surprise to the Dr.s performing the study, they thought it was carried through both male and female. The GCA is the best I've learned about as I have been in so much pain for so long. Long before I went blind. I'll have to update my profile to include all of this and more. Thanks so much for responding! Everyone has been so great!

Another welcome and so sorry you are going through a difficult time. Do keep in touch and let us know how you're getting on.

Cindy688 in reply to Jackoh

Thank you!

Welcome Cindy! Your bravery ( to a fault) is astonishing. You’ve just experienced my biggest terror. Waking up in darkness. This is a really safe place to be nakedly honest about how you feel. There are truly extraordinary people on here and you are one of them now. 🌈

Welcome to the site. Always sad to hear what some people are going through but you will be well supported. Also you will also laugh along the way.

Welcome from me too Cindy,l am sorry to hear that you are going through so much,this forum is so helpful and the advice is always given from those who really understand your illness,and you can say just how you are feeling,we are all wanting to help you .Keep posting to let us know how you are getting on xx

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