Sticky Blood-Hughes Syndrome Support

My life lately

Well I haven't been around much as my whole world had sort of fallen from my hands for a moment. Its not together yet but getting there very slowly.

I found a lump in my breast which led to tests, and finding of a few suspicious spots. Then they noticed my lymph nodes in my neck still really swollen. Tests, tests and more test but still no answers. We are working towards that slowly but certainly..... Biopsies should be scheduled by end of week. Hoping all is done by Christmas. I see two different doctors tomorrow after seeing yet another one today. Overkill if you ask me, but my primary is insistent. For once I am being compliant (well semi compliant).

One big thing is massive GI probs,. I have enough gas to fuel a small village. Bloated and uncomfortable as well. Doesn't mix well with this added fat I have put on from stopping smoking and lovely steroids...

At same time, been going throug much other personal trials and tribulations and not feeling so well lately at all. I have been more emotional than I ever have been and probably a good thing. I don't think I ever let myself be vulnerable but now I have no choice it seems. A new emotion for me and not sure I like it. Definitely hate being alone, too.

So other than the poop storm above, all is good. Really. I am not so bad, just a little blip in my life. Things will be good again soon.

8 Replies

in nature , more fat is stored for the long winter months ahead , maybe be you are longing for colder climate ,the wild beast in you is emerging . good thing the mateing season is over. now what do you yhink of that my lovely the computer wiz


Hi there sending you lots of energy boosting thoughts and hope things get better for you as soon as possible. Mary F x


Hi Kristina,

Sounds like so much is happening but maybe your number one priority is to 'take care of you'. Sounds like the medics are doing their bit but maybe you can take care of the 'you' part of you. You know the sort of stuff, be extra good to yourself watch your favourite dvd's, do a bit of window shopping and dream - whatever does it for you, you deserve it, we all do! I know it works for me.


Hi Kristina,

Well done for stopping smoking. Brilliant, be very, very proud of yourself.

As for enlarged glands. I have had constant swollen glands in my neck and arm pits for several years now. I did get them checked, but no one really knows why they are like that! I have now stopped worrying!

Gastro..Oh my goodness... a bad ulcer helps me understand a bit of what you going through.

Just trust in your doctors..... and if you don't..... change them!

Am so sorry about your feeling rather alone emotionally, you are not alone though. We are here and really can identify with you.

Be kind to yourself, if you feel miserable... cry. If you feel tired... lie down as much as you are able. If anyone (adult) moans, tell them to 'bugger off'

As Nonny says... watch movies that inspire you. Take a bubble bath. Chat to us. Read books you love. Find something that makes you laugh every day.

As Mary says... we are all sending you our good thoughts and loving energy.

Remember to not forget who you are in all of this.



Hi Kristina,

I am really sorry you going through a rough time but we all hear for you and happy to lean an ear to listen.

As everyone else has said you need to look after yourself.



Hey Kristina - really sorry to hear of all your trials and tribulations but well done on giving up the dreaded weed :)

I had a couple of tumours removed from my breast and, thankfully, they turned out to be benign but I know how awful the wait is with all the testing.

Keeping everything crossed for you and sending good vibes across the pond.

Kate x


Hi Kristina,

Sorry to hear you are going through a very emotional time at the mo' I can understand your worry about the lumps etc :( I do hope you have good docs that are doing their job quickly & sensitively. x

I too am going through some 's**t' at the mo', was a big kid at xmas time, always have been! but since last year when it went as it did...long story :( ........ I've found myself not looking forward to it like I used to.

I do hope you give yourself plenty of 'me times' & put yourself first, I hope everything will be ok for you, all the best,

Sue xx


Hey everyone- I want to thank you all for the kind thoughts and ideas.

I have been to the doctors (several, lol) yesterday. I don't need the breasts biopsied. The pain and lump I can feel is just dense fibrotic tissue, and the other dark areas showing on the ultrasounds (they did yet another yesterday) are most likely small cysts caused by the lupus. He said he has seen tons of women with lupus having the same thing, biopsied them and they turn up benign and not a worry at all. I go back in 6 mos. I also mentioned my neck lymph nodes and he said same as above- chronic lymphadenpathy is common in pts with autoimmune disorders. I left there VERY relieved.

Then I went to hematologist/oncologist and he said I need to be on therapeutic dose of lovenox once daily- 1.5mg/kg!! Seems like an awful lot but said I was playing russian roulette every day I am not on an something. Was very worried about that. He said I was the worst case he has ever seen which at first freaked me out but then I figured that I bet I was only the second or third one he has seen, lol!! Its because I am consistently high on my titers and have LA, Anticardiolipin, Anti B2Glycoprotein1, and phosphytidilsterene, and I know I am forgetting one other....

We discussed my lymph nodes and he said they were too small to worry about it being cancer but two in front were pretty big. Said same thing about autoimmune disease being the cause many times in women with lupus and APS. Said to have em biopsied and that will give a baseline. I go back next week for CBC.

Soo I left there and went to work.... When I got home I slept a great, refreshing 9 hour stretch- first time in a very long time!! I woke up today feeling much better.

Tomorrow I have a upper GI and small bowel follow through. Next Friday is the biopsy of the lymph nodes. I could have it sooner, but decided to wait until I had another day off, as will be getting poked both sides of my neck and may have pain afterwards.


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