First,I Want first I want to wish everyone a very happy and safe New Year's Eve. It is 4 p.m. here in Virginia and the US rainy and dreary.
I have not been on much in the last several months. It has been an up-and-down healthwise year for me out of work three times for three different issues PMR, balance and most recently, eyes.
This was this was my six Christmas without my youngest son I lost in 2013. It was my first Christmas with my only other older son Patrick in nearly 10 years. He actually came at Thanksgiving and came back on the Thursday after Christmas.
I finally made a switch from rheumatologist who did not say anything but his own opinion. I was hopeful a young female eight years practicing would be more up-to-date and flexible. I was wrong. I just saw her I am down to 9 mg prednisone starting October 2017. Because of my other health issues my taper slower than the norm. She wants me off not down but off so I guess I will hang out with her as long as I can and start the process all over again. How you can not be comfortable prescribing prednisone but you are comfortable with the leg length long side effects of Methotrexate and Plaquenil is beyond me. And given what I have gone through most recently with my eyesight I would beg to differ with taking a chance.
7 weeks ago I started having some issues with my left eye sight. I've always had floaters due to dry eye and other issues but they picked up quite a bit no lightning bolts. One morning I woke up and it was as if a curtain was pulled over my eye brown with about 50% Vision obscured. I made an eye appointment at least I attempted to I was told to come the following month. The next week I worked and things got bad really fast. By the time I saw the two eye doctors and retina specialist surgeon on November 19th things have progressed too far. I had emergency surgery on November 20th. I just found out this past Thursday that the surgery was a success and regards to not being totally blind. However, it was not a success and that the right now tear and attachment and the hole in the macula were too extensive for repairs. Anyone with the macula problem can relate to the wavy and what I call a squinched Bow-Tie fact of all square or straight surfaces. I'm told 6 to 9 months required to get used to this monovision. If anyone has experienced this I would love to hear from you. This was really the last thing I expected. Well hopefully the track record of 2018 will be left behind and the new year will be smoother.
Best to all. Janet
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So sorry to hear about all your suffering. I'm in Virginia too--Charlottesville--and am having my own rheumatologist issues. Don't think I will stay up until midnight, too tired. I wish you a better year in 2019!
Oh I really oh I really appreciate your sharing this blog. I really relate to most everything on the list. Add having to redo things multiple times like this message to you because I'm hitting the wrong buttons!I found a good article this week on WebMD on living with one primary.
I have been out of work 7 weeks following my surgery and recovery and the news that just came on Thursday afternoon about the retina and the macula being too extensive to repair. Boy did that shocked me. I drove some for the first time yesterday during the day. I'm doing to go back to work on Wednesday. It is dark when I get off very unsure about all of this not much choice. I will need to have cataract surgery sometime April or after. It should help??? The acuity but the deformities of my vision what I say because of the macular hole will not change. Just something else in life to get used to and slow you down. Hopefully after this year I won't have any more body parts to throw me a curveball LOL. Thanks again for sharing this is really helpful I'll share it with my family to better understand. I know what I see I wish I could just take a picture to share. Janet
I know exactly what you mean about taking a picture so others can see as you do, but as I couldn’t - I wrote my post to try and explain.
Things will and do get better, but at times it’s extremely frustrating - even now - but at least it’s liveable with, and doesn’t stop you doing most things.
I really appreciate the encouragement. it's the first I have gotten from all of you here in this group. I think my surgeon was excellent. he was very thorough but I think the delivery of this news on the final outcome left a lot to be desired. Happy New Year to you. Again I appreciate your article so I could share it with family and friends.
Sorry to hear about your eyesight. I had two macular holes 10 years or so before I got PMR. One on NHS and one privately. I then had cataract surgery about 10 years later which improved my eyesight heaps. After macular hole surgery you have to be face down all day & night for 2 weeks to 10 days which is a bit tricky.
I am so lucky to have Moorfields Eye Hospital in London.
I completely sympathise w your eye issues. Hope things improve.
good morning. I am sorry to hear you I have experience with the macular holes. I had surgery vitrectomy November 28th and spent eight days and they rented Medical vitrectomy chair which by the way my insurance company rejected covering they call that a comfort or convenience, LOL! Obviously they've never been in that chair after the surgery. Probably like you I ended up with more body pain on top of it. It sounds like you had more success with your surgery than I did. I'm glad for you. Wishing you a happy New Year.
Wow! JG, you've been through the ringer!!!!! May 2019 be much kinder to you!
good morning Melissa, I guess this is just the icing on the cake on top of everything else. I am certainly hoping that 2019 is a kinder and gentler year for all of us. Happy New Year to you. Janet
Good morning, the thing with the doctor is just so frustrating because you just don't know what the new Dr. is going to be like. I wish all of us here a kinder, gentler and healthier year. Janet
Good morning, yes I hope that is the same for everyone here. Having Christmas with my oldest son was a miracle in itself. 💜 I wish you a very happy New Year.
How very difficult for you. I am so glad you had a good reconnect with your son. It is hard when someone is missing at the holidays. Hope you are able to adjust smoothly to another new way to live. We are remarkably resilient aren't we?
It really helps to have such support and insight from everyone here, especially those who have gone through this particular vision situation. Thanksgiving and Christmas with my oldest son Patrick was a miracle. We had a wonderful reunion. I'm just sad that we have lost so many years. He is now 32 and I'm getting to know him as an adult versus a college graduate. I hope you have as smooth a year as possible in relation to the PMR. You take care, Janet
You have been through the mill and I'm so sorry that you didn't receive the timely care you so badly needed to protect your eyesight. When you feel up to it I think you should register your complaint somewhere - not sure how it would be done but those involved in your "not" care need to know the outcome of what they didn't do.
I hope the worst is behind you and 2019 brings better days.
Thank you for your thank you for your kind reply and support and suggestion. I actually laid the groundwork for that when I emailed a letter to the practice manager at the doctor's office explaining what happened obviously this was before I knew the final outcome of my surgery. I received I found call an email from the ophthalmologist I'm concerned and probably cautious about pending liability depending on what happened. Not sure what I will do as far as taking this forward possibly legally. Have been out of work 7 weeks go back today driving is scary at best in the daytime. And I'm excited about 2019 and all of the possibilities. Take good care and best to you, Janet
You know I've always been focused on the symptoms for GCA of the eye pressure, temporal pain, and others. The brown curtain got by me somehow. Though this turned out to be a different but equal a serious and time-sensitive condition, it should have been addressed immediately rather than focus on a 30-day appointment because I needed a referral. I bet that 9 days between that phone call and finally an emergency visit could have made the difference in my vision being restored. As I said above I'm, I addressed this issue USC practice manager at The Vision Center and I did get a call from the doctor. We discussed how this could be prevented in the future for anyone else, how employees who make appointments need to consult with a doctor rather than make a decision when they hear sometimes that are so abnormal. I'm not sure what I will do at this point to possibly pursue this legally I have a lot on my plate going back to work this afternoon for the first time after 7 weeks. Everyone's support here is helpful and comforting. Take good care, Janet
just wanted to say thank you to each and everyone of you momentarily for your responses care and concern and suggestions. Dorsett lady I shared your blog with my family. I have an appointment I have to get to yes on New Year's Day but will reply to each of you later hopefully tonight. Hope you're having a wonderful New Year's Day. Janet
Sorry for your eye trouble. Hope 2019 will be kinder to you.
It reinforces my opinion that the only person who really cares about your health is you. You have to jump up and down the loudest to get what you want! Valerie
You are so right. We are our own best advocate. Sometimes unfortunately we run into walls. I certainly want to make sure this happens to no one else in the future. I have addressed this weeks ago with the practice manager and doctor. I could have never imagined this happening to my vision and it's not even GCA but equally debilitating. Everyone's support here is really awesome. Take good care, Janet
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A flare of GCA
Hi all, new to this vile condition 
I’m a GCA patient who is new to this site... being treated with Actemra and having a difficult time with a prednisone taper
I’m sort of back ....have missed you.
