Hello everyone, I am new here, and terrified. So terrified I am ashamed! I have delt with serious auto immune overlap for forty years. The symptoms, the appointments the drugs….I have handled it pretty well. But since October something has changed. I was told I have MGUS. It is a possible precursor to blood cancers. Plus I have been feeling pretty awful for a long time. I finally had my MRI’s done, and some labs which did not come back with good news. My diagnosis isn’t done yet and I don’t see my rheumatologist until Aug 8! I don’t think I have ever been so frightened and I am just sure I just don’t have the fight left in me. Any support appreciated. TeddyBear
Hello @TeddyBear ,
You are welcome here. Your fears are normal and there are many here who share your feelings and know this territory very well. You are in good company and not alone. I"m so sorry that you are going through this, especially having dealt with health issues for so many years. The waiting and not knowing is so hard. I was so scared when I received my diagnosis and had days of feeling a mess. No room for shame…..your are human, going through a scary time……be as kind as you can with yourself. I hope with the help of this community, you will find strength to deal with what comes now. Keep reaching out….there are folks here who will have wisdom, knowledge and compassion to offer.
I am sorry that you find yourself in this place after struggling with your health issues for so long. However, kick that shame to the corner - it serves no purpose. Your emotions are human emotions, and you are certainly entitled to them, given what you are dealing with.
Can you walk in nature? Put some uplifting music on? Watch a comedy? Find something to take your mind off it while you await the news and treatment plan?
Keep reaching out. There are many here that have ridden the same emotional rollercoaster. You got this!
@TeddyBear Hello and welcome from ON! So glad you reached out to us……Please……do NOT feel any shame, whatsoever….you/we/no one “asked” for this “journey”…..but we are all here to support one another, on our journey……
We all understand…..one way or another…..whether we are a patient…a loved one of a patient….we all know the difficulties, and then some!
Please; do NOT Google….it is outdated…and NOT your friend…..write down all your questions, for the Aug 8th appt. Most important ones on top of your list. Perhaps even call their ofc, and be placed on the waiting/cancellation list….you might get in earlier…..help calm the fears….
When I heard “those words” (You have cancer….) I was in complete shock…..I thought I was healthy….I had a colonoscopy….woke up….was ready to make lunch plans; it all got derailed, within minutes….I did not even “know” a Dr can “see” cancer…..He saw a-plenty.
As was mentioned earlier…..DO walk in nature…..it is so calming….so healing……sip tea in the afternoon….practise deep breathing….soak in tub……read a good book/watch NetFlix……
Lean On Us…we are all here to support!
Whitelilies (Also from ONT)
oh TeddyBear…..there is NO SHAME in this game…..feel your feelings, friendo…..
and like my dear old dad used to say: a problem shared, is a problem halved!
while August does seem like a long time from now, you know as well as I do…that time passes far too quickly when you are having fun, and much too slowly when you're not!
so---if you can, try to find some fun stuff to keep you occupied.
do you have folks/family near that can support you?
summertime, depending where you are, is the best time to connect with nature.
here in Alberta we have had a terribly wet/cool start to the summer. when I was in the throes of my cancer story, (2020), the summer was so lovely….I spent so many hours having outdoor coffees with lady friends and really deepened my relationship & connection with that group of women. it was a gift that I cherish to this day.
if you are at loose ends, perhaps connect with the Canadian Cancer Information Specialists @ 1-888-939-3333. they have access to resources in your area.
visit here as often as you like. there is someone here 24/7. we are listening.
cheers from over here
@TeddyBear Welcome to this caring community where I hope you will find the support you are seeking. Please do not feel ashamed of your feelings, sometime we can only keep ourself up on our own for so long when dealing with health issues. As human when dealing with health issues we often feel ashamed of our feelings because one of the first thing that comes to mind is….some people are a lot worst than I am so why should I feel sorry for myself. You have been strong for so many years and with this community’s help you will hopefully continue to do so. I am in a way in the same situation that you find yourself in. I had lung cancer in 2020 and I am now NED, 2021 I had a diagnosis of two autoimmune disease….Lupus and Sjogren’s. My white blood cells have been slowly decreasing for the past year plus lately some swollen glands, so my rhumatologist not quite sure what to do next sent me to an hematologist last month to find out more on what’s going on thinking it might be something having to do with my bone marrow. The hematologist did talk to me about blood cancer, tests have been done and my next appointment is august 30 to get the results.
As you can imagine, what you are thinking right now I am thinking the same thing and asking myself the same questions you are. Will I be able to deal with this if those results come back positive? Will I be able to stay strong and keep going? For myself the answer is yes because when I think about it I have not gone through all this to just say all of the sudden that’s it today I give up. I think until now I have fought a good fight and I will keep doing so no matter what the result of those tests are going to be. I am far from being done with living yet!! Deep down don’t you know you will too? I am pretty sure that you haven’t fought all those years to just give up now, you seem to be a person who has the strength and the courage to do this and keep going. Do not feel ashamed, that feeling will just make you loose your focus which would be better spent on taking good care of yourself, it sounds like you have done such a good job of doing that until now….you’ve got this!
Resilience….today is a brand new day and I will make the most of it!!
Thank you strike, it is true it diagnosis is kind of a mess. I am a very organized person. Clarity sure will be welcome. TeddyBear
Yes Sadie, I love nature. It is so big that it tends to make all worries smaller. Thank you for your encouragement. TeddyBear
Hello Whitelilies, or should I say neighbour? LOL. Yes, it is strange that although I have known all these years that the over-the-top inflammation can do terrible things to our bodies, now in actual reality it somehow seems to have caught me off guard? I had a in bed day yesterday, that never happens….and my hubby who has always known I am his right hand man, well we are both rethinking some things. Thank you so much for your kind support. TeddyBear
Hello supersu, yes I know Alberta well, we have a niece in Calgary. Her weather is a pet peeve for her. I have not talked about the situation with my close family as I don’t really have all the information that they are going to want. They know well my AI struggles and are supportive, but this is going to be different. I want to be able to give them good information. Also if it turns out not as bad as I think I would worry them for not. At this point it is the waiting and the wanting to move forward with life no matter what it looks like. Thanks so much, TeddyBear
Well Nickie, aren’t we a pair! My AI stuff has affected my blood before. I had Idiopathic Thrombocytopenia Pupura in 2016-17. ITP is low platelets. Mine just suddenly dropped to zero. After 8 months on 90 mg prednisone, tapering on and off, my hemo gave up and I began Rituximab. It worked great. No side effects really, maybe a little fatigue on the second day after…my platelets have remained stable since. I was told this kind of thing can return though. I suspect my specialists have always known this day would come. Thank you so much for the encouragement, and I have worked hard and am proud of it. This darn fatigue is a concern though, I find my determination to do lots of things is not as good. I think I need to rest more? Maybe some added Prednisone. You see I have Addison’s Disease as well, which means my adrenals make no cortisol at all. I get my strength and stamina from a bottle now. Prednisone. But I get my determination from my Mom. She is watching over me I am sure. Thank you, Teddy Bear
I want to create a special post to all of you who are navigating your own difficult paths. It never ceases to amaze me that it is precisely these kind of people, you people that can endure the worst and still be the ones to give the most. I guess it is because we recognize real adversity. We also recognize what really matters. I wish for you all, the very best comfort, and the very best day, and the very best news the next time you see your doctor. Teddy Bear
Hey @TeddyBear Don’t you dare feel ashamed. It’s ok to be terrified. It’s ok to be YOU and feel how you feel. But not shame though ok? Cancer is a terrible thing to go through. There is so much involved that we don’t need to add shame to the list. And you know what you DO have the fight left in you. It’s in there I know it. Sometimes this is all so overwhelming that we just want to hit the pause button or eject for that matter. On the days that you are weary lean in to us. You are loved. I really hope things go in your favour. Sending you teddy bear 🧸 hugs 🤗❤️
@TeddyBear When you want to respond to someone so they can see your response to them all you have to do is type…@and the name of the person you want to respond to, you will see a blue box appear with the name of the person in it you just click or tap on that name and it will show up in blue letters just like I did above and for me it would be @Nicky01 that way people will get your answer in their email inbox.
For myself I refused for to take medication at first….just denial at first I guess but the blood tests kept coming back worst from one time to the next so 2 months ago I was prescribed Plaquenil (Hydroxychloroquine) he did say that if that doesn’t work I will likely have to try Prednisone. I did have some bad side effects for the first 2 weeks with Plaquenil but it settle down after that. I was told that fatigue and tiredness does sometime come and go with a low immune system.
Like you said you have worked hard and you are proud of it, so just another reason to put the shame aside…it doesn’t belong in your life, don’t carry that on your shoulders you have enough to carry has it is! As far has not being able to do things the way you use to before just listen to your body for now until you find out what’s really going on, if one day at a time is all you can take for now then do that, only you can take care of yourself right now with all the support you need right here amongst all of us listening and supporting you for as long as you need. Sending warm hug and good thoughts!
@TeddyBear I’m just going to vent a bit with you, autoimmune diseases SUCK! it’s a life long sentence of surprises of getting new conditions and diseases. I personally have had it, cancer wasn't even on my radar of things to worry about. I didn’t think I could take anymore, but I did, surgery, chemo, radiation, and now more meds to add to my list. My daughter‘s Friends call me a beast because I keep getting through it but not with many many desperate days of thinking that I’m done, I just can’t spend every waking hour, and sleeping ones too, taking care of my health. it’s exhausting! Having AI can take some of the resilience out of you, but like others have said, you didn’t go through all of that other stuff to give up now. You are not alone in feeling this way, it is completely normal to be anxious waiting for a test result it is nothing to be ashamed of and if someone is making you feel that way Shame on them! One day at a time.