Could I really be this unlucky?

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thistlegirl
thistlegirl Member Posts: 229
edited 4. Mar 2014, 15:02 in Living with Arthritis archive
I have Juvenile Rheumatoid Arthritis. Even though I am 34 I am still Juvenile(in many ways!) I was diagnosed as a baby so pretty much life long medication, high doses of painkillers and have worked my way through most arthritis meds having reactions to NSAIDs and others- My friends call me Lab Rat.
At the end of May I found a lump on my stomach and a week later a lump appeared on my cheek. I went to the doctors immediately and after a slow start they were mobilised. I was diagnosed with Panniculitis a month ago after an Ultrasound but they were still doing tests and not exactly being quick with treatment plans etc. I had my biopsy at the end of July and at that point only my GP was in my corner, my Rheumatologist was saying it wasn't her responsibility and until the biopsy results were in the GP couldn't refer me anywhere else.
...............So I talked to my GP yesterday and the biopsy shows some concerning results that need further investigating, characteristics of Lymphoma was mentioned-that is the first time I have "said"that, it is not diagnosed, it could be fine but well it could not be.
There has been increased risk of Lymphoma listed as an possible side effect on some of the medications but you never think it will happen to you.
I have been trying to write this since Friday and I am still not sure if I will post it, I haven't told my family yet I don't want to worry them until I know one way or the other but they are going to ask soon. The doctors have stopped my abatacept infusions until they work out what is going on, instead of my infusion on Monday I am going for a chest x-ray. They are going to see my joints get worse as the drug runs out.
Sorry for the ramble I just need to tell someone and you guys are the safest.
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Comments

  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
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    Hi Thistlegirl
    I'm new around here with not much experience of all the ins and outs, but I can see how distressed you are and how much effort it took for you type that out. It took guts and I am so so very sorry you're going through this right now. I can't offer you anything in the way of advice, but I just couldn't pass by your post and not comment. I can understand you not wanting to worry your family, but you need support yourself. Sending huge hugs to you, I really hope that you get results quickly so that you know what you're dealing with. xxx
    Toots x
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Sending big hugs to you thistlegirl. Hope you find out out soon. Will be here for you to chat either way, ok?

    ((((thistlegirl))))
    xxAnna
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi thistlegirl,

    I'm really glad you were brave enough to post as I think getting that said for the 1st time may make things a little easier for you!!

    I think you need to tell ure family wots going on. They'll want to support you while ure waiting for ure results ... I'm speaking as a Daughter, Mum & Nan!! I'd be gutted if a member of my family was going thru this alone ... Let them in & let them do wot families do do best ((((hugs))))

    Please keep us posted. I'll keep everything crossed that ul get a speedy referral with a favourable outcome.

    Take care & keep talking, it'll help.

    ((((strength)))) xxx
    Healing Hugs
    Debbie.x
  • Megrose489
    Megrose489 Member Posts: 779
    edited 30. Nov -1, 00:00
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    Hi thistlegirl, you're going through a hard time, so just want to offer you some support and some ((((hugs)))).

    Take care,

    Meg
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Don't even think of apologising, thistlegirl :) I think one of the main purposes of this forum is to provide a 'safe place' for posting stuff that we're still trying to get our heads round.

    I quite understand your reluctance to share information with your family until you have something more concrete to share. Otherwise one ends up dealing not only with one's own worries but also with everyone else's too. And with their 'helpful', often conflicting, advice. However, as you say, they are going to ask soon and you will need to decide how much to tell to who. I think posting on here was a very good start as it helps clarify things when we write them out.

    I find listed side-effects less and less useful the older I get (and I am now quite old :lol: ). With everyone covering their backs, most med's leaflets list most things one could possibly contract. However, some will be more likely than others.

    In the early '90's I had breast cancer. I found the lump in January and, as my appointments kept getting put back because of Bank Holidays, I didn't have the mastectomy until May. I'm still here to tell the tale so try not to worry about the delay though I think you should ensure they don't delay further.

    Think positive, use us in any way that helps and do not apologise :roll: OK? (((())))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hello Thistlegirl. How brave of you to post your message on the forum, but that is what we are here for to support and help one another. I am so very sorry to read your news and of the difficult time you are having and do hope you will have some definite news soon so that you can get things sorted.

    Please remember we are all here whenever you want/need to 'chat' to us.

    My thoughts are with you and am sending you some(((()))) to help you along.

    Take care of yourself.

    Beryl

    xx
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
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    Hi there,

    I think it has already been said by all, but I just wanted say how brave you have been in posting on here for the first time. As said, we will all be behind you. Keep on posting letting us know how things are going for you. Sending you some gentle hugs.
    Karen xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, thank you for your courageous post and I wish I could help with something more practical than words but I cannot. My take, for what little it's worth, is this.

    In your shoes I would not be telling the family anything until you yourself know one way or the other. If it isn't then there's no harm done, if it is then you will need some private time, some quiet time, some very personal time and family can sometimes struggle with allowing that. They will also not think twice about loading their extra cares and concerns about you on to you. I think you will have cares and concerns enough, don't you?

    We're here to listen, to be impartial and offer neutral advice, and as many of us are on the meds that you are we may have a different insight into this situation. Come and talk to us, use us as your sounding board, keep us updated as and when you can, please. I am thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Claire38
    Claire38 Member Posts: 42
    edited 30. Nov -1, 00:00
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    Hi thistlegirl,

    Sorry you're having such a hard time of things at the moment.

    I hope you get some results soon, and that all will be ok.

    Thinking of you and just wanting to send you some support and some ((((hugs)))).

    Claire xx
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Hi Thistlegirl,

    Sometimes life just seems beyond the pale doesn't it? I've no wise words, just wanted to say we're here to listen, and sometimes just putting fears into words is the 1st step in facing them head on. Keep talking to some one you trust, some stuff is just too big to handle alone.

    Big hugs ((((( ))))).

    Deb x
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    Thanks for the comments and hugs guys they are much appreciated. I have hibernated on the couch this weekend, back to work tomorrow. Now I will work from one target to the next, tomorrow I get a chest x-ray, on the 2nd I see another Rheumatologist-I was just sent an appointment through the mail I presume it is to do with the lumps but it could also be about my troublesome ankle, why would they tell me huh? My Gp talked to my usual consultants team on Friday and they are going to get back to me when they have talked to the consultant re infusions etc. I am waiting on an appointment from hematology, they are the big ones I suppose.
    I am trying to be patient but since May all I have been doing is trying to get these damn lumps diagnosed, but will I like it when I do?
    Well I am off to dig out a hard book to read, a box set to watch and start a knitting project for my niece - basically fill my head so full that there is no room for thoughts.
    thanks
    Thistle
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I hope both work and the chest x-ray go well, thistlegirl. I shall be thinking of you on 2nd and, hey, don't wait too long for that haematology appt. Chivvy them on as necessary. This is a stressful time for you but remember we're all here for you. ((()))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello and I am sorry I have only just seen this
    You must feel so mush easier talking about this ...you have gone through so much in your young life...it just doesn't seem fair ...I do wish you well with results and the chest xray...and please dont forget we are always here..just wish I could help more..(((()))xx
    Love
    Barbara
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    So I got a message today that my Rheumatologist consultant is going to call me tomorrow. At least now we know what you need to do to if they are ignoring us. Get someone to say Lymphoma!
    Anyway my mum called today and she has managed to break a bone in her foot, she hates/fears medical stuff so it took her over 24 hours to go to the hospital and the wait in A&E was not great. She has fainted before when taking my sister to A&E for a kidney infection. Needless to say my dad took me to my appointments when I was a child although she did stay with me on the ward when I was being diagnosed at 18 months. I think the hormones over-road the phobia at that point.
    I wasn't planning on telling anyone this week but she has now given me an excuse. I am filling my days with work, knitting, TV and reading. It is working pretty well but getting to sleep is tougher so I am reading til exhaustion.
    One of my friends said to me today that she admired me for how I have dealt with my health setbacks over the past few years, that was tough, I had to stop myself saying "we'll see!" It wasn't the time or place for it, one thing at a time.

    Will let you know chat the phone call with my doc brings, she is normally pretty proactive so fingers crossed.

    Thanks again for listening

    Thistle
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    I hope they've got something constructive to tell you Thistle!! Ure strength throughout all of this astounds me. Keep talking on here if it helps

    (((hugs))) xxx
    Healing Hugs
    Debbie.x
  • Megrose489
    Megrose489 Member Posts: 779
    edited 30. Nov -1, 00:00
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    Thinking about you this morning, Thistlegirl. (((())))

    Meg
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    Hi Thistlegirl, hope your not left waiting all day for a phone call! We are all here waiting to hear from you. Sending you a big (()).
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Thinking of you and sending you some comforting (((()))) Beryl
  • Mat48
    Mat48 Member Posts: 1,075
    edited 30. Nov -1, 00:00
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    Dear Thistle. I just wanted to say that I think you're doing brilliantly at stoicism - I know we say that we have no choice but you've had to make choices and I think you are doing so very bravely. I hope your knitting is growing fabulously and that you are managing to occupy your mind to fill the gaps too. I'm so impressed - I'm 50 but I think you've just become my new role model! Mat xx
    If you get lemons, make lemonade
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi thistlegirl,

    Sorry I'm late to this thread :)

    Nothing to add, really – just planting some support.

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • CathrynJane
    CathrynJane Member Posts: 7
    edited 30. Nov -1, 00:00
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    Dear Thislegirl.

    We're all so anonymous on here, but I'm sure you know that behind these few words on a screen, there is a real person (and other real people) wishing you the very best. I know how scary all this is, but the not knowing is the worse thing. I've been through a pulmonary embolism which left me debilitated and it took a while to find out what the problem was. At least once you know, something can be done. With my latest diagnosis of facet joint arthritis, I know there will be ongoing pain and I can't imagine how you've coped all these years. You must be an expert by now!

    I hate the anonymity of the internet, so to make this more real, I'm a teacher in Birmingham, and I'm sending you massive great hugs!!
    Much love from Cathy.
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    Hi, thanks for the kind words again.

    Well the doc called early today and she was good but it is all really out of her hands now. She was able to tell me that as well as my rhumy appointment on the 2nd I also have a hematology appointment on the same morning (same hospital thankfully). I also have a CT scan on my head and neck on the 9th Sept.

    She was quiet but concerned but agreed with me that until we know anything for sure that to stay positive- I am trying really hard here.
    My Rhumy appointment is for my ankle and she said best to get it injected to help when the Abatacpet wears off. I am off it for now, if I do need C***** treatment it will be some hard core treatment and the Abatacept probably wouldn't mix with it. I didn't ask about alternatives, I don't wan't to think about it, the last time Arthur was set free he wasn't kind to me.

    She did say that there was some thought on a link between Lymphoma and RA etc due to out rubbish pathetic immune systems ( something along this lines, brain is a bit mushed.)

    I have been thinking about telling my family , I want to wait to see what hematology says. I will need a lift home from the hospital if I get my ankle injected so my hand may be forced.....

    Thanks for being here, next target is Monday, I have never liked Mondays but now I can't wait for them to arrive.

    Thistle
  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    (((((Thistle))))))

    We can't change wot is in our immediate futures but we can definitely change how we face it ;)

    The whole group/forum will support you thru ure appointments, I'm definitely available for pocket duties on Monday.

    Only you can decide whether or not to tell ure family. I know it can't be an easy decision.

    Ure doing great :) xxx
    Healing Hugs
    Debbie.x
  • Megrose489
    Megrose489 Member Posts: 779
    edited 30. Nov -1, 00:00
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    I'll be available for pocket duties on Monday, too, Thistlegirl.

    Look after yourself. ((()))

    Meg
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    I'll be in your pocket too. Think you'll need some large pockets for us all! You are doing so well and we will all be with you every step of the way. Sending a few more ((())) to help you along.

    Beryl. xx