Lupus: Hello everyone, it has been a while since I... - LUPUS UK

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Tiras profile image

Hello everyone, it has been a while since I made a post, probably well over a year. On top of SLE I have now been diagnosed now with cancer. My Lupus skin issues have gotten progressively worse, I am now going on over 3 years that I can not wear shoes, yes I have been barefoot 100% of the time, winter, spring, summer and fall. I now have a ulcer on my foot for 3 months. I hope sthe friends I use to have, are still here in this group. We use to be more like family!

52 Replies

Sorry to hear that Tiras - all the very best,

Tiras profile image
Tiras in reply to PMRpro

Thank you!

Hi Tiras,

Welcome back. It is lovely to hear from you, although I wish it were with happier news. The ulcer on your foot looks incredibly sore. Have they changed your treatment at all? Have you begun treatment for the cancer too?

Tiras profile image
Tiras in reply to Paul_Howard

Thank you Paul!

Well you may or may not remember, I have nerve damage in my feet and lower legs (doctors say nerve damage is due to Lupus?) so, no it doesn’t hurt because I don’t feel it.

As to the cancer, they think they caught it early enough, it is prostate cancers. Got 2 options surgery, or radiation. Laura and I have discussed it in depth. Looking at all of the side effects and function. There are so many things to consider and take in! The cancer is contained as of now to only the prostate, biopsy showed Cancer in 30% Of it. Laura and I have pretty much decided on the robotic surgery?

However, should you have any information (or even your opinion) that might shed some light, or something we have not thought of, please feel free to do so!

Thanks Again!

Paul_Howard profile image
Paul_HowardPartner in reply to Tiras

Hi Tiras,

Well I am glad that it isn't causing you significant pain.

As I'm not medically qualified I cannot give any advice about the best course of treatment for your cancer, although it is good news that they think they caught it early. There is a community on HealthUnlocked for Prostate Cancer if you wanted to chat to other people with this - healthunlocked.com/advanced.... I can also recommend Prostate Cancer UK for having good quality information - prostatecanceruk.org/

Keep us updated with how you are getting on.

Tiras profile image
Tiras in reply to Paul_Howard

Thank You!

Barbara17 profile image
Barbara17 in reply to Tiras

So sorry to hear about all your problems. Just to let you know my husband was diagnosed with prostrate cancer 11 years ago and had his prostrate gland removed. He’s now been cancer free for more than ten years, he’s fit and well and enjoys life. Really wish the same for you.

Tiras profile image
Tiras in reply to Barbara17

Thank you!

Laura and I have pretty much decided on the robotic surgery. As of now the cancer is in the prostate only, approximately 30% is cancerous. Doctors say after surgery should be no sign of cancer left?

Thank you again for your information!

You poor dear. Sooo sooo sorry. Hope you’ll be able to fight it all and recover.

Much love and gentle gentle hugs 🤗 sweetie.

EJ. xxx 💗

Hi Tiras I'm truly sorry about your recent diagnosis I know last year was also very hard for you and your family and the losses you went through but for the short space of time I have known you on the platform you have been very positive and supportive of many people. I just hope that the C was found in time and that treatment is possible. Looking at your foot picture it has shocked me, not because of how it looks but how simular it looks to my grandmas foot at the moment and Drs are unsure as to what my grandma has even tho I believe she has lupus, she is badly riddled with arthritis and currenctly has these sores on the bottom of her leg, so indirectly you have helped me with this post.

My thoughts and prayers are with you and your family xxx

Tiras profile image
Tiras in reply to Sami1982

Thank you! Yes, I try to be positive and to help everyone, with what I have experienced. If you remember I had my motto and I still do!

“Lupus has changed my life, but, I will not let Lupus control my life “

I’ve been busy with everything going on, my wife’s Dad has been diagnosed with dementia, and her Mom is not doing well. Helping take care of them. It just been an extremely busy and time consuming year! Maybe can get back in touch with this group (family). So many of you all have help me through some tough times. Especially when my Dad passed away!

Welcome back Tiras, I've been wondering how you are. I'm so glad you posted but I wish you had better news.

Its so good to hear from you, I'm just so sorry that you are having such a difficult time.

You will always find support here so please keep in touch xx

Tiras profile image
Tiras in reply to happytulip

Thank You!

I always have gotten support from my family here!

I gotten help and I hope I have help some of y’all along the way also?

Doctors say the cancer is contained to the prostate gland only, they say it is early enough to get it? Got 2 options surgery or radiation. Laura and I have discussed in depth both. Leaning to the robotic surgery? After considering Side effects and function? Tough decision either way!

Again Thank You!

Hi, Tiras!

We’re still here! I’m sorry that your Lupus has been causing you so much trouble, and very sorry to hear about this new diagnosis.

I know that you will deal with this with the same strength, sense of humor and faith that you have always shown.

We’ll be here to support you and cheer you up and encourage you!

I will be praying for you every day!

God bless you, Tiras!

Lorelei

Tiras profile image
Tiras in reply to Lorelei

Thank you!

The doctors say that we probably caught it in time? The cancer is on in the prostate gland, however, 30% of the prostate is cancerous?

Got 2 choices surgery or radiation. Laura and I are leaning to surgery and get it over with. I’m afraid of radiation because of Lupus skin issues?

Oh, I will try to keep the humor and humorous post going!😂

Lorelei profile image
Lorelei in reply to Tiras

My dad was diagnosed with prostate cancer at age 68. He went on to live to be 81! After his prostate surgery, he was never bothered by prostate cancer again.

I understand your concern about the effect the radiation treatment may have on your skin. It’s a tough choice to make, radiation or surgery, but your rheumatologist will be able to give you the best advice!

I’ll be thinking of you and your wife and praying for you!

🙏🏻

Lorelei

Tiras profile image
Tiras in reply to Lorelei

Thank you!

Dear Tiras,

So good to hear from you again but shocked and saddened you now have cancer to contend with too! You were always so cheery and positive and supported lots of folk on here.

You and your wife are a great team and I am sure you will get through this together.

We will all be rooting for you on the forum and sending all our best wishes and healing thoughts.

Please keep in touch and let us know how you are doing. XX

Tiras profile image
Tiras in reply to cuttysark

Thank you!

I will do my best to keep you informed and what is going on.

I intend to help and inspire also. And yes I will keep posting humorous things along the way. I’ve had so many tell me they love the funny things that I posed. If I can make just one person smile, and forget their troubles and pains, even for a few fleeting seconds, it is worth it!😊

Hello Tiras! I’ve been thinking about you and it’s been so long I was getting a little worried albeit I’m a complete stranger on the internet.

So sorry about the difficulties you face, with your humbling positivity.

A big hug from away xxx

Tiras profile image
Tiras in reply to Lupiknits

Thank you!

Yes it has been a while, we have been busy, Laura’s Health, her parents health, and my health. We stay in doctor’s offices about as much as we stay home! It seems like it anyway!

in reply to Tiras

Good to see you back Tiras even if your and your family’s health has been causing pretty heavy duty distraction. Wishing you well with whatever you decide. 🤗

Tiras profile image
Tiras in reply to

Thank you!

Hi Tiras I'm new to the group but would love to try and help. My SLE is dormant after 36 years. Tell us more about when the ulcers started. There could be a number of factors medication and or diet. It's not to say your diet is wrong I just found with SLE your body and digestive system doesn't work the same combined with various medications. Sometimes it cannot handle our life choices like alcohol or smoking. This is then displayed through the skin in all sorts of forms rashing, ulcers, spots are all an indicator that something inside your body system is not right. I not sure whether the ulcers are related to SLE Check your meds with the doctors this could be a reaction and/Or look a your food choices restrict acidic foods, diary and wheat. Also to help with your shoe problem what about using the Velcro strap shoes they give you at Hospital when u have your bunions done. I'm sure they can help you. Its a long shot but have u been test for diabetes?

X

Tiras profile image
Tiras in reply to Sue6

Hello, glade you came to this group/family. I have been with this group/family for 2 to 3 years. Yes, with things we’ve had going on, it has been a while since I posted anything.

Nothing has changed, medication, diet, (actually we grow a lot of our own food, and use no commercial chemicals, this includes meat & veggies). My skin issues have progressively gotten worse as time go on. I go every 3 months and get literally inspected from head to toe, yes, even in the neatherland ares for skin issues by a medical team. Any and all rash, blisters, etc. get photographed. I can get these places anywhere and everywhere on my body.

As to shoes, we and doctors have tried everything, any rubbing at all even for a very short period of time, will rub me raw, and or cause blisters that will literally GROW! My doctors have finally said, do not wear shoes. They have even given me medical statements that I can’t wear shoes, (just in case I go some where and they say I have to wear shoes) actually, I very seldom have anything said about being barefoot.

It is not just my feet, it is all of the skin on my body, I can’t wear rough clothing or it will rub to. I actually wear soft flexible leggings under pants for protection (soft flexible leggings are usually all I wear at home, I know that sound odd coming from a guy, but, we do what we have to do).

Thank you so much for your insight, we never know when ones experience can help others!

Sue6 profile image
Sue6 in reply to Tiras

Hi Tiras so sorry to hear things aren't improving. Are seeing a dermatologist? There is a steriod cream I used many years ago that did wonders for sores and blisters. I will try and find the name of it and get back to you. Keep positive we'll beat this together. X

Tiras profile image
Tiras in reply to Sue6

Thank You!

Yes I am seeing a dermatologist also, and yes, I have creams (yes, more than one) to use on the ulcers and or blisters. I also have a cream for the sensitive areas, (unspeakable area down under). When I get ulcers. Rashes and blisters there.

Oh Tiras you poor thing 😞 that looks so sore!

I’m actually new to the group and we haven’t met but, hey there and welcome back! I do hope that your news gets better but whatever the weather, you shall always have support here!

All the best lovely 💖🌟

Tiras profile image
Tiras in reply to Peppytea

Thank you! It’s good to internet meet you😂! I have made a lot of friends over the years in this group/family. We have help each a lot along the way. Maybe we can be some help to you, and you can help someone from your experiences. Not to mention you get support from this family. That’s what it is all about! If we can help just one person through their life’s struggles, we have made the world a better place!

Thank you again! Hope to talk/text to you again!♥️😊

Hi. We have not met before.

Sending you warmth positivity and love. Xx

Tiras profile image
Tiras in reply to Tia666

Thank you! It is good to internet meet you also!

Hello Tiras. Not spoken before but Sorry you are having a tough time. Reading your post reminds us all how Lupus can manifest. Sharing your post of how your skin has been affected and your new diagnosis reminds us all how important regular health checks are especially when suffering from a chronic illness. I’m most touched by your positivity and words of support with Laura to guide your decisions.

Wishing you success for your future health care

Kerrclan xx

Tiras profile image
Tiras in reply to Kerrclan

Thank you! Hello to you also! My Lupus especially my skin issues have gotten worse over time. I go to my doctors regularly (actually I’m in 1 to 2 doctors a week now, all different kinds mind you). However life goes on, live it to its fullest while you can. I have my motto that I have had for years, the family I have in this group has seen it over and over again, my motto is

“Lupus has changed my life, but, I will not let Lupus control my life”

I continue to do anything I can and want to do! Don’t plan on stopping anytime soon!♥️😊

Kerrclan profile image
Kerrclan in reply to Tiras

Such an inspiration 💕

I hope you manage to get the correct treatment and management of your conditions very soon.

You must be so worried and fed up.

I'm sending you big hugs x

Tiras profile image
Tiras in reply to Hopes77

Thank you! Yes, I am tired of it. Actually last night I told Laura ( my wife) I tired of waking up to blood stained bedding, if I have a place, it can get caught on the bed sheets, comforter, etc. and start bleeding during the night, I won’t know it until the next morning!😪

It gets old quickly. However, we do what we have to do, and go on.😊♥️

Hi Tiras

Pleased to meet u!! I too am sorry to hear about your troubles n I do hope that u have a good outcome..u r positive thinking!!

Are u getting your foot dressed by any nurses? I have ulcers on my feet..on the soles though n I have to dress them..many nurses have had a go at dressing them but I tend to kick out at them..it's kind of a reflex action with me..if I did actually kick them I'd hurt myself more than anything else!! So I do them myself because then I know where I can touch them n prepare myself before I do..hubby helps n we get it done.. we're quite a team now..I do have a background in nursing so that helps!! I can give some advice on dressings I use of it will be helpful.

Also shoes or comfy slippers...I have had real problems with finding slippers n socks that I can get on over the dressings..I was buying footwear two sizes too big but socks were just too painful. I found a company called cosyfeet n they make special shoes n slippers n socks that have deeper n wider shoes n slippers so u can wear them with dressings on or othotics inside etc.. they're 'extra roomy' n they sell extra roomy socks as well which r easier to get on n off. Quite pricey but worth every penny..at least I can go out now. Cosyfeet have website they're based in Glastonbury UK.

I always love humourous posts!! A good giggle is the best medicine I find!! 😸Xx

Tiras I've just read your profile n I take back everything I said about shoes etc because you're obviously happy as the Barefoot Gardener!! 🌺🌻🌼Xx

Tiras profile image
Tiras in reply to Krazykat26

Thank you! Yes, I have actually gotten use to going barefoot, (not sure I would wear shoes now, even if I could😂). We and doctors have tried everything over the last 2 to 3 years? The bottom of my feet I have no issues with, i do have skin issues from the top of my feet to the top of my head, and anywhere & everywhere in between. As for the ulcer on my foot it is a lot better now than it was 2 1/2 months ago. Everything takes so long to heal!

Krazykat26 profile image
Krazykat26 in reply to Tiras

Yessssss me too with the skin rashes etc..funnily enough the only rash I don't get is the butterfly rash on my face!!! Soles of my feet n palms of my hands..n cracked joints in my fingers r my worst places..but I'm always spotty, flaky,weepy,itchy somewhere on my skin!! Glad to hear your ulcer is improving x

Tiras profile image
Tiras in reply to Krazykat26

You know that is kinda funny, because I don’t have or get the butterfly rash on my face either?

Sorry to here about your health but very nice to here from you as it been a long time since you posted

Tiras profile image
Tiras in reply to Ianrussell69

Thank You!

Yes, it has been a while, probably close to a year?

Oh Tiras....while I’m so happy to hear from you I’m also so very, very sorry to hear about your cancer diagnosis. 😞 With the love and support of your wife along with your amazingly positive attitude, you WILL beat this! No doubt about that!

Sending you gentle hugs....

Tiras profile image
Tiras in reply to milkwoman

It is good to hear from you also!!!

Thank you!

I got confirmation from the cardiologist yesterday afternoon. That it will be ok to do surgery to remove the cancer. It is contained to 30% of my prostate. Doctors say I should be fine and they are 99% sure that they will get all of the cancer. So starting to get everything ready for the robotic surgery.

milkwoman profile image
milkwoman in reply to Tiras

That's terrific news! While surgery is never fun, you can now go into it with confidence! Robotic surgery - how neat! You’re a trail blazer!

Be sure to let us know how surgery goes! 😊 I will be thinking of you!

Hi, lovely to hear from you again, just wish it was with happier news. Wishing you a full recovery from prostate cancer, please keep us updated if possible. Thinking of you x

Tiras profile image
Tiras in reply to jayfer

Thank You! And I will.

So sorry to hear you're having a tough time .your foot looks so painful. Hope things get better for you.here to chat when you want. my dad had prostate cancer but he was only able to have chemo injections because of his poor health so glad youve been offered surgery.

Tiras profile image
Tiras in reply to englishrose67

Thank you so MUCH! I do appreciate all the input for you all who have information on prostate cancer! It has helped me, and somewhat eased the frustrations. However, there are still a lot of unanswered questions I have, not sure who or how to ask? Yes, embarrassing question? Doctors give generic answers?

Thank you again.

Hello Tiras. It’s really good to hear from you again. I’m sure I’m not the only one who had missed you. Im really very sorry to hear about your cancer diagnosis. We’re all here and right behind you. Wendy x

Tiras profile image
Tiras in reply to Wendy39

Thank you! It seems as if things have gone backwards for the last several months! I have not had (or took) the time to stay I contact with everyone. When I did have time, I just wanted to rest. Everyone here has been extremely nice, and yes it is great to hear from y’all again. I may not get to stay in contact everyday, but at least try to stay up two or three times a week. With the surgery coming up, to be scheduled soon? It may get a little hectic, I’m sure I’ll be out of commission a day or two then?

I hope you have had a good day, and wishing you a great night!

😊♥️

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