Jan 58's Status Updates

hello Rebecca, yes it seems so and hopeful be a better experience then the first one but will see how things go.
Thank you so much will let you know how things go.
Yes definitely a whirlwind that’s for sure.
I showed him my elbow but didn’t say it looked like psoriatic arthritis said could be arthritis but it’s better for the dermatologist to see and the folliities,I am still using the fucidic acid but no antibiotics thank goodness, the itching and more spots still driving me mad but will see what they say next week and what I can use.
Yes with me I was always at the gym after work seven evenings a week, I couldn’t get enough,I was told I should only go three times a week but I loved it, so maybe that pushed it away for then, it makes a lot of sense.
You take care and hope your puppy is settling down a little for you.
Will let you know what’s happening when I know Rebecca.
Look after you, take care
Caring hugs sent to you
Jan

Hello! I am so very glad to hear you had a positive experience and that someone is listening to your concerns. I do hope that you are on your way to relief both with AS and your skin condition through physio and hydrotherapy. It's been a whirlwind for you. As for progression, I feel I've had AS for a very long time as well. I was a dancer and worked out quite a bit in my teens, 20s, and 30s, kept it at bay, and it only started to show its face in my late 40s with intense lower back pain. Glad you had blood work, your physician is discussing MRIs and that you are heading to the dermatologist. What has he said about psoriatic arthritis? Hoping answers come ... Warmly Rebecca (comm moderator)

Hello Rebecca
I think it went ok, Nick came but he didn’t say anything which was ok as he can’t remember anything anyway.
We got there on time as my appointment was for but we waited awhile saw rheumatologist nurse first at later saw consultant for ten minutes and asked other questions that the other rheumatologist didn’t ask, I showed him my notes and he wrote all down and then I had bloods done the consultant said he might do MRI in a closed scanner as I had both MRI done in an open scanner,he is not sure yet as will look at the ones I had when he gets all my notes from other hospital yikes 😱 then ring me in to see if I need the MRI again and go from there and sort out a treatment plan as said at 64 it’s very,very rare to have AS so I must of had it since I was a teenager or in my twenties but as the progression was so slow I didn’t know I had it and I was exercising in my thirties and forties so if I had it then the exercise would of kept it at bay but no one knows.
So I will let you know what happens when I hear, I have dermatology next Tuesday and I am on a list for physio and hydrotherapy, I was told it’s a long list.
Thank you so much for those questions you sent to me they really helped a lot.
Please take care of yourself
Sending you big 🤗 hugs
Jan xx

hello Rebecca, yes I will do that, I am writing down your questions so I can add to my notes, thank you everything helps.
No I was never evaluated for that but I did tell the other rheumatologist who said it was probably eczema and so did the Gp but no tests for it as it was just a guess, I had this red itchy rash on my left elbow I have had it since all this first started it’s only there and doesn’t go anywhere else so I will ask that tomorrow thank you as it could be that I don’t know.


Thank you so much for the links,I have printed them out and will take with me, I really appreciate all your help and support.🙏.
I am sorry your pain has increased, it sounds like you have a lot going on with you and your puppy she sounds a lot of fun but hard work so hope you can rest as best you can and the puppy bless her will settle down.


I really do hope so as i don’t think it will be the consultant I will see first as with the other hospital I saw a rheumatologist nurse first so that’s what I am expecting to see.
Nick rang up the Gp to cancel it, he finds it very difficult to use the phone but the receptionist said that the mental health nurse will be in touch to make another appointment but so far nothing yet, so he is stressed waiting for the call but it’s cancelled for tomorrow.






Thank you so much Rebecca please take of yourself and rest as much as you can do.
I have learnt more from your community than I have from anything in the uk.
Sending you very warming hugs across the miles to you.🙏

Jan

Great news! Keep us up-to-date on things. I wonder, though, have you been evaluated for psoriatic arthritis? That may be a question to discuss on Wednesday. Here's a link for information - https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/psoriatic-arthritis/ Also, here's a link to a brochure you can quickly print out and get some ideas regarding what to ask. https://spondylitis.org/wp-content/uploads/2020/12/SAA_Womens_AS_Brochure_Update_WEB.pdf


This little Australian puppy was picked up on the streets of Phoenix, limping, and taken to the AZ Humane Society. She has a fractured pelvis. She has so much energy that it's tough trying to keep her from zoomies and wanting to play. But she really needs to heal. I hope her x-rays show the pelvis healing in a couple of weeks.


I have been okay. I am dealing with increased pain, but managing it. Switching up meds and making adjustments so things are a little wacky. I am just trying to keep up with the household, the pup, and resting.


I am so sorry you've been dealing with this rash, pain, and fatigue for so long without answers. Hopefully Wednesday you will have some answers. I do hope this practitioner takes the time with you to get you on a path to healing.


Also great news for your husband! I do hope he can find another appointment in a few days rather than weeks. He would benefit so much as this appointment is an opportunity to gather information and develop a plan that best supports Nick's mental health and well-being.


Here are a few questions that you can bring up - it definitely is not a full or comprehensive list. Do switch them up to aim them toward your situation. Your first rheumatology appointment is crucial for understanding the condition, exploring treatment options, and establishing a plan for managing your symptoms.

*What are the recommended treatment options?


*Are there medications that can help manage symptoms and slow down the progression of the disease?

*How do these medications work, and what are their potential side effects?

*How can I manage pain associated with ankylosing spondylitis?


*Are there both pharmacological and non-pharmacological approaches to pain management?

*What is the typical progression of ankylosing spondylitis?


*Are there factors that can influence the course of the disease?

*How often should I come in for follow-up appointments?


*What kind of monitoring or tests will be needed to track the progress of my ankylosing spondylitis?

*Are there potential complications associated with ankylosing spondylitis, and how can they be managed?


*Are there dietary or lifestyle changes that could help manage my condition?
Are there specific recommendations for maintaining overall health and well-being?

*Are there support groups or resources you recommend for individuals with ankylosing spondylitis?

*How can I stay informed about the latest developments in the treatment of ankylosing spondylitis?


I hope this helps. If you have more questions, please reach out. Sending you better health and wellness. Returning the hugs you've sent! Warmly - Rebecca (community moderator)

hello Rebecca, yes still struggling with the spots, but I got a letter from the new hospital and have an appointment on Wednesday I can’t believe how quick it was.
I have been writing a list of questions to ask but not sure they are the write questions I keep changing them,do you know what to ask? I am nervous and I really want to be calm and cool and ask the right questions.
How are you doing? Yes that’s good and we all need to do that.
How is your puppy? What happened to it?
Oh bless you, you have the same, it’s very difficult totally.
We do talk and support each other as best we can, I have been in-touch with the doctors for nick, and found out they have a mental health worker there now only been there a few weeks so said about Nick how he is and an appointment was arranged with the mental health worker on Wednesday same time as my rheumatologist appointment so he said he is going to change it as wants to go with me but I hope it’s not going to be long as he really needs to see someone quick.
Thank you I really hope to avoid it as I had covid last year and was in hospital with it.
I really hope things improve for you and your puppy gets better very soon.
Thank you so much for your hugs 🤗 🙏. Warm caring hugs sent back to you Rebecca.
Look after you and have lots of self care.
Take care
Jan 🙏

Hello again Jan! How are you doing currently? I've been wondering if you are still struggling with the rash and other things. I have been on here very little as I am fostering an injured pup and taking care of myself the best I can. I am terribly sorry your husband is having a hard time. I know how difficult it can be as I too have depression and social anxiety. Then add caregiving to the mix and it can be totally overwhelming. I have good days and bad. I hope that he can get himself sorted out and settled. You're in a difficult predicament - you are both caregivers to each other. It can be terribly hard when one of you is having a particularly bad day and the other is not feeling up to help. It's truly commendable that you're trying to support him while also managing your own health. Balancing caregiving responsibilities with chronic illness can indeed be demanding, and it's crucial to address both your well-being and your caregiver's well-being. If your husband continues to resist seeking help, one way you might help is to express how much you care about him and how his well-being is important to you. I definitely hope you avoid COVID-19 and have a wonderful Fall season. So glad you've got a dermatology visit coming up. I pray you get answers to your ill health. Thanks for the hugs - I feel them and acknowledge them - Hugs are sent back across the way. Warmly - Rebecca (community moderator)

hello Rebecca thank you so very much for all your support., I am so glad your doing ok, I am sure you said you had a problem with your hip before, I hope your ear and hip gets better very soon, honestly it really helps to talk with you and helps a lot more than you know, your going through this like all of us on here but I feel very few people can really understand unless they have it.
I am so sorry about your ulcers they are horrible and before AS I never had them, now every week and on my lips it’s difficult to eat and drink, the other day I injured my salvia gland, the dentist said it would take ten days or so to heal.
Can I get that herbal mint or similar you think in the uk?

I try my best to block things out, I did start a journal but gave it up, I think I might start again, it’s more difficult because my husband has ADHD and suffers with depression and social anxiety, he has family but can’t to them and since covid started he has got worse, he stresses at a tiny thing and he is my caregiver but letting himself go and he is struggling and only person he can talk with is me and I am trying to help myself but emotionally he can’t give and yes we are very close and he does things in the house make me dinners, and the garden and things in our house always something but needs time out he doesn’t get it. I feel he is heading for a breakdown so I do what I can when I can to try and help, my daughter would help but he says he is fine, non of his family understand as don’t understand what I have and tried to explain but no good and they tell him to go for a (walk and cheer up,) they have no idea what depression and social anxiety is.
He do goes walking but doesn’t like leaving me a long time on my own and he takes photos like me he loves it but it’s not a cure.
With me I love take photos, feed the birds, we go for short walks together, go out in the car when we can, I read, watch television, listen to music that’s how I cope I don’t know as each day just goes by, I am not mixing with people I am too sacred of catching covid again and it’s nearly winter here so many bugs about, I want to mix I love talking to people but I can’t over that, I have very down days but not depressed or have social anxiety like my husband, I try and help him but it’s difficult.
Did I tell you I have dermatology appointment on the 24th oct I hope it goes ok.
Rebecca look after yourself and let me know how your hip, ulcers and ear are.
Sending you across the miles,massive caring hugs, thinking of you so much.
I will do and you as well. 🙏

So glad to hear from you. Yes am doing okay - have a right hip that is hurting quite a bit and an ear issue I hope isn't related to my AS. I wish I had more notions to help you through this. unfortunately, I have only have conversations and sentiments currently. I feel you are in a neverending loop of folly and I really feel awful you aren't being treated well. I am dealing with ulcers as well and they are PAINFUL. I have been using an herbal mint treatment on them and it seems to help heal them faster. I pray you get some relief and that the rash/boils settle to much less than irritating. How are you managing to get through this - I just don't know. I send support and wish you better days ahead. Pls, keep in touch. Rebecca (community moderator)

hello Rebecca so nice to hear from you, how are you doing? Yes driving me mad all of them are, I have more ulcers in my mouth, new spots on my head,new areas and itch like mad, some are boils red and so sore I can’t comb my hair properly, it’s painful, I rang the Gp they did a phone call and gave me antibiotics, didn’t even see me, I finish them in two days.
Spoke to the receptionist at the hospital who said she thinks the referral is in a pile of papers somewhere and the consultant who was back on Tuesday will go through the pile when she can!!! I just put the phone down it’s one thing after another and no one is talking responsibility.

Yes lunacy is a word I would use, I don’t know who to tell and where to go higher up as I don’t think there is anyone.
Yes I remember you telling me about your daughter and the struggles she had I bet she was glad to go home.
Thank you so much Rebecca I don’t have much hope at the moment.
Love and hugs to you.

I've been meaning to connect with you this week to see how you are managing. They really have you going in circles. Absolute lunacy. Did you decide to go back on the antibiotics? I know indirectly what you are dealing with, as I mentioned before in a post that, my daughter was there for a year. She really had a difficult time getting treatment. I hope that the consultant can help when they return. Thinking of you as you struggle for treatment and recovery. Sending patience, healing, and resolve. With warm regard, Rebecca (community moderator)