Just feel like moaning because I don’t feel I can do so at home. My hubby has just be diagnosed with Hodgkins lymphoma and is starting chemo on Tuesday. It’s stage one so we are both very postive and he is full of black humor which is great because it helps us both to cope. But I’m in pain too. My Rheum apt is not until a week from tomorrow and I have finished the NSAID’s she prescribed. My GP won’t give me any more because I’ve been taking them for 3 months and he says it is dangerous. I don’t feel I can complain because its not cancer and I look fine. That sounds terrible but I feel this is the place you will understand. I am concerned sitting all day with Hubby through the treatment. Of course I’ll get up and walk around but I think the stress of helping him is making my pain worse.
Hi yael, I’m sorry to hear of your husband’s diagnosis, I hope chemo goes well for him. I’m with you on black humour, definitely my preferred variety in a crisis. This must be a difficult time for you both though.
I understand that you feel conflicted about asking for help at this time. But your GP might just have a few more tricks up his sleeve if pushed and I think it would be entirely reasonable to emphasise that pain control is very necessary at the moment. It’s not possible to disentangle a chronic disease from the context of our lives, our needs and challenges change all the time. I’d be asking about a steroid shot in the backside, this is fairly routine in the UK though relatively uncommon in the US so I don’t know whether it’s an option where you are.
Yael, this is the place to moan. Goodness knows, we all come here to “let it all hang out” from time to time. Sorry about your husband’s diagnosis, but like you say it’s early days and you are probably aware that there are some very good treatments for Hodgkins. My husband has just recently finished radiation for prostate cancer, and diagnoses like these certainly change your perspective on life, don’t they?
True. What you (and we) have isn’t cancer, and we look fine but please don’t dismiss your pain on the basis of that logic. You need to remain as functional as possible because your husband is going to need your support. So I agree with Sybil: get to your GP’s and discuss pain control to get you through to your rheumatology appointment. Long term NSAID use isn’t a good idea, but another few weeks, to get you through this difficult period isn’t going to suddenly cause terrible damage.
It wouldn’t be surprising to find that the stress of your husband’s diagnosis and treatment make your pain worse. Many of us have found this to be so. That’s why you need to see your GP about this. It’s a bit like the oxygen masks in the plane: you have to put yours on before you try to help anybody else. Time to look after Yael.
Stay in touch, and come here to moan anytime. Yup, we get it.
Hi yael, so sorry about your husband but you sound hopeful and it’s good he still has his sense of humor!!! Laughter is the best medicine…
We know our disease isn’t usually as scary as cancer, but many PsA sufferers have severe pain and disfigurement that isn’t being helped with meds and it is serious. I wonder sometimes how many people shut down or commit suicide when their pain is unmanageable and there is no hope!!! It’s definitely then as serious as cancer!
Many of us are very fortunate to either not get that disabled and the meds work so we can go on with a fairly normal life…
I think we are really sensitive to the pain and illness of our loved ones and sometimes the worry and anxiety we have because they’re suffering is part of what causes our disease to flare! That is probably why you need to moan–and there is an understanding here among all of us because we are in the same boat! We don’t look that sick and we aren’t needing chemo, which I can’t even imagine, but we are dealing with chronic pain that has no end in sight for most of us and we don’t know what the future holds as far as our disease progression or if the meds we take are going to keep working or fizzle out, as they do often do.
So, moan if you must–this is the place where you won’t be judged!!! ️
Oh its so good to hear from people I know what I’m going through. I am going to say something terrible that I can’t say anywhere else but I feel my husband will get over it (his prognoisis is excellant - he has stage one and it is just a matter of a few months treatment) but I have to live with my disease for ever. I don’t get any sympathy and if I complain that I’m hurting I think that people just think I’m making a fuss. I can move, I dance, I work…so wants the problem? Nobody can see the wound I feel inside that starts in my back and runs down my bum and legs. Plus my thumb moves but shouts when it does!
BTW any jokes for PSA? We have lots for cancer…my hubby asked the Dr. if his hair would grow back after chemo (he is totally bald now before he has even started!) Thanks for the advice…I’ll go to my GP today. I thought I would just suffer for a week until the Rheumy apt. but it’s going to be a tough week with the chemo so as Seenie says I need to be functional.
I still chuckle when I think of a new, young GP keen to tell me that she’d mugged up on ‘sorry-erotic-arthritis’.
Ha Ha love it!!
Hi yael, sorry to here of both you and your husband’s struggles. I hear you when you write of your invisible wound. So much of PsA can be an invisible disability and thus negated by others. Such a dilemma to find others who understand…glad you posted as this is a great place for understanding…sorry no jokes for psa but i love Sybil’s
All I can say that this disease is a real pain in the ass!!
Thanks Sybil and Seenie for suggesting going to GP. I wouldn’t have coped yesterday (hubby chemo day) if I hadn’t taken your advice. I saw a different GP in the clinic and he was fine about give me more Arcoxia (NSAID) to get me through before I see the Rheumy. Wow I never knew how much that pill helped me until I stopped taking it for a few days!! I can’t take this indefinately though I don’t think…we’ll see what Rheumy has to say on Monday.