Love my husband

My hubby took me to hospital today, totally unrelated to lupus, I've been told to expect a letter from another specialist to remove my gallbladder. He was a really nice guy and I explained to him that I was being investigated for lupus and he asked me all sorts of questions. He said that I would have pain after the operation but if it should continue longer than he thought it should that he would look after me and not to worry but keep taking the pain killers in the mean time.

A couple of weeks ago I had my first appointment with the rhuematologist and can you believe after months of feeling I'll, do ill somedays I could walk, think or talk straight but he took notes listened and took all the blood tests, which came back normal!

On the way home today, I told my hubby that I needed more pain killers and he offered to take me to take me to the GP to get some more. He glanced at me and said I think we should let the doctor see you. In between me seeing the specialist and driving to the doctors, I had a distinctive redness over my checks and between my brows, my ankles and hands started to ache badly! I remember feeling last week very hot and sweat pouring from me and I felt flu like but it kept coming and going but I didn't feel tired. Today I haven't been able to stop yawning.

The doctor confirmed that it looked like a butterfly rash and my husband told him how I felt, I was feeling shocked at how quickly it came on this time and my mind was just not thinking straight. He took my blood pressure which was high and with having CKD that's not good. My youngest daughter came to live with us last month( my hubby is her step dad) and my eldest came to visit today. They all rallied round and have been great and I feel so fortunate. I haven't been formally diagnosed yet but feel now I have moved area that I have also a very supportive doctor who thinks that I have lupus and is supporting me the best he can. He advised me to keep a diary fort next rhuematologist appointment is in August.

No one wants lupus but if it answers a lot of unanswered questions about my health issues that I've been having for over 5 years and my be a lot longer at least I know what I am dealing with and I will manage it! Sorry for any grammatical or spelling errors, I haven't proof read it and fingers and brain have had enough. Xx

18 Replies

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  • what is ckd?? chronic kidney diease?

  • i had ckd before i went onto dialysis then i had a transplant. It means your kidney has failed and you may need dialysis or a transplant.

  • I try not to think about it too much but really happy to hear you were able to have a transplant. Hope you are doing well and it as improved your life. Xx

  • Carolha, so happy for you , a supportive family is half the battle, and especially a husband such as yours. My hubby goes with me to the Rheumatologist too, to remind me of things I don't remember hearing !!! Hope things settle for you soon and the gallbladder op goes well. xx.

  • Thank you x

  • Same here. I always take my husband into appts with me because he tells it as an observer. I have a tendancy to say I'm ok when I'm so not. Support makes the illness 100 times easier to deal with :-)

  • You're a 100% right, hope you're doing ok xx

  • Yes CKD is chronic kidney disease, they had no idea at the time what had caused it. Thank you for all your comments as well, greatly appreciated xx

  • Having support makes all the difference and I often think of friends who are on their own and having to manage best they can - don't know how I would cope. Like you, I have tremendous support from my husband (he really would carry me ..if he'd only had the strength! ;) ) and I am so very grateful for him. However, no one is perfect, so won't go into details about his cleaning skills! xxx :)

  • Oh, don't get me wrong he's not perfect, as you said, who is? Makes me wonder what I would do if I were alone. My husband often jokes that he married a younger woman so he had someone to push him round in his wheelchair - lol. He's nearly 10 years older than me ;) I suppose I would cope as a lot of people have to. Xx

  • ..starting to wonder if we married the same guy! xxx :D

  • No. Could be brothers otherwise you'd not see your husband at all! Lol he's let me sleep this afternoon while he's been planting in the garden and my girls have been quiet reading and made me tea when I woke up. Will miss my eldest daughter when she goes home tomorrow.

  • HI Carolha, just to let you know I am also waiting to see someone about having my gallbladder removed, and hope me saying this will help in that you know someone else is having this problem and you are not alone. With you all the way hon!

    I also have a very understanding hubby who is my rock, he has watched me suffer for 32 years with Lupus and all the other probs that go with it. So, I truly count my blessings. x

  • Hope all goes well with your operation, are they removing your gallbladder due to lupus or gallstones. I know I have gallstones but wonder if lupus has been playing a part in all the pain I have? If your name is carol the same as me I think we were also in the same school year - lol - end of 58 for me. Xx

  • Hi carolha, just a quick reply to say I also had gallstones which were so bad they ended up removing my gallblader, the pain was worse than having a baby, and soaking wet hot one min then frezzing cold, they removed my gallblader 10 years ago and i suffered the same pain ten years on even thought it had been removed, luckily i had a very good gastro specialist who knew about lupus to and its affects on the upper GI region he sent me to a rhumy, who named it lupus, and the pain is due to inflamation of all the organs etc, now on hydroxy for the last 4 weeks and i have had the mild pain but nothing like i used to.. Is this similar to yours, i have seen and talked to more than a few people who have or had gallbladder issues then discovered they have lupus...could there poss be a link i wounder...good luck with your opp, remember to take it easy, hugs x

  • The pain is worse than having a baby and I am sweating and then cold, the specialist was great and said he would look after me. My gallstones are small but there are a lot of them, just waiting for the hospital appointment to go in and have it removed. Tired now even though I've slept all afternoon! Xx

  • Glad that you have a supportive family, and also by the sounds of it supportive doctors. Wishing you all the best with the gallbladder op and with diagnosis process. Take care of yourself, and let hubby take care of you as well! Xx

  • Thank you xx

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