Hi All! Been to the rhuemy!

[Tam@->---]

Hi folks! Just got back from the long hawl to see the rhuemy, one of the joys of living in the middle of no where! I know in honesty I have no reason to complain as there is always people worse off, but today I'm being a big girls blouse and feeling self obsorbed!
When I went to see him I was feeling much better than I had been over the last 3ish months (ALWAYS the way). He asked how i had been which resulted in the water works! I proceeded to tell him sore swollen you know how it goes! He examined my joints and said the disease was very much active and all my joints were imflamed (which I kinda was thankful for cause dont you hate when you go to see them and all seems just dandy!) See I had been to the gp a week or so ago and she told me she suspected I would be put back on 25 mg of methotrexate when I go to the rhuemy(which I was) but she also told me my bloods looked ok!......... which had me thinking i was going crazy in the head a feeling i havent experienced since early on in my lupus journey!
I told the rhuemy i was kinda relieved their was evident inflammation cause i was thinking i was maybe losing my mind! He assured me he has never doubted any of the symptoms in the past and he wasnt about to now! He also said the symptoms I am displaying atm has him thinking I have rhuematoid arthritis as well as the lupus..... He said he really hopes it isnt the case but i may be one of the unlucky ones!
He has put me back on 25mg of methotrexate still on 400mg of plaquenil, 2x50mg of tramal 4 times a day, mobic and 10 mg of prednisone(GP had me on that but he wants me of it ASAP so i have to reduce it 2.5 mg a fortnight). He asked me why he had reduced the methotrexate in the first place and I for the life of me couldnt remember! .... on looking through my ever growing file, it was because of mouth ulcers and nausea etc so he told me i may have to grin and bear it a time! FUN FUN I hate the stupid stuff but i know it does help so I shouldnt complain, but he said Looks like you wont be reducing this one in a hurry if at all! which is fine........ but i was staying with my best friend who has a 3 month old baby....... and it got me thinking being that Im like 28 (which Im not meaning is old by any means and I'm not even contemplating a baby in the for seeable future. BUT it got me thinking I do want children and what if i cant get off the silly drug long enough to be able to have a baby.......... I KNOW I DONT HAVE REASON TO COMPLAIN I KNOW I KNOW I KNOW, but i have no other avenue to vent these concerns cause it results in my friends mum, dad and everyone panicking and freaking out and wanting to wrap me in cotton wool, and I dont want to make people worry. So please forgive me for this babble!

You think I would stop but nope just a little bit longer then i will hush my mouth.
I have been on the pill for a few months now to help my crazy insane in the membrane period.... i was getting it every 1-2-4-6-10 weeks just randomand excruciatingly painful(you guys really dont need to know this but on I go!!! :-s) Well it as helped the pain, for the first 2 months all was well, but i have had my period twice in the last 10 days.... the rhuematologist wants me off it and to see a gynacologist.......which I am happy to do, but I dont want to go off it till i see the gynacologist cause i cant cpe with the pain it doubles me over like someone is stabbing me in the stomach from all angles!!!I'd sooner have my period pain free evey week then put up with the pain of that and all the other stuff!

Then there is the chap I have been seeing for a few months and he is lovely and just the sweetest ****** ever and he seems fine with everything ....... but i kinder feel he may be fine now but will he always be? probably not and i have never let my self get into too close of a relationship because i dont want this to effect them my screwed up body, which consequently makes me a sooky lah lah girls girl! I sometimes think it is easier to just be me then I only have to deal with the rubbish......SUch a drama queen today! Sorry again........ Im gonna just stop and go and yeah thanks for taking the time to read my dribble and letting me vent some!!!

Tammy

[Joandublin]

((((((((((Tam))))))))))

I was just about to go get a shower and get ready for the day when I read your post and I wanted to reply first (hope you dont get the pong from here! ;) )

You have such a lot of things to contend with - so many things which you have very little control of and so many questions about your future. Of course you are concerned and anxious:hugbetter: Who wouldnt be? You have no reason to feel that you dont have a right to feel bad or complain just because other people are worse off. There is ALWAYS someone worse off than ourselves but that sure doesnt help any when we are faced with such difficult times:hug:

Each of us has to cope with our own problems and personal situations and each one of us is precious and special to our friends and families. There is only one YOU.

Im thrilled that you have found such a sweet man in your life and I know it must be so worrying wondering if he will be able to deal with the real, long term issues that this disease can throw at us. The truth of the matter is Tam that you will never know unless you try. I do think that the most important thing though is not to play down your symptoms or medical issues but rather try and be as frank as you can - given the unknown quantities of this disease.

As each day goes by both of you will learn something more about each other and hopefully this learning will only strengthen your bond and relationship. You are a lovely human being Tam - thats clear from your posts here. Warm, generous, humourous and special - not everyone is made that way so I reckon this bloke struck lucky! :) Put the shoe on the other foot for a moment. If you discovered that this bloke suddenly had a chronic illness or life threatening illness, would you walk away? Im sure you wouldnt. Yes there will be times when it will be hard for both of you and times when you will feel angry with your body - but there will be many good times as well to counteract those.

Make today special Tam and may all your tomorrows roll around with the sun shining. Life is what happens while you are busy making other plans ;) (John Lennon quote)

Much love and I had better go get that shower :)
Joan:rose:

[LolaLola]

Hello Tammy,
Don't worry about needing somewhere to say all this.

I hope you feel better soon and that the increased MTX helps.
x Lola

[Tam@->---]

Joan - ' I do think that the most important thing though is not to play down your symptoms or medical issues but rather try and be as frank as you can - given the unknown quantities of this disease.'

~ I think you are so right with this and I have been somewhat.... mainly because he lives several hours away so we only get to spend every 3rd weekend together or so.... Last thing i want is to be feeling dreadful, so i do everything in my power and with the help of some meds to feel normal and spritely for three days, but he has done some research on lupus and tolerated some tears in our daily phone calls and seems to be ok with it all atm......... time will tell though wont it :)

A question if anyone has any insight....... what is the effects of long term use of drugs such as methotrexate have on fertility? I have been on it over 5 years and was just curious!

[shelly21]

TAm,

a big massive cyber hug.....

i totally feel for you, but we all have these bad days, and we all have our vent on here(or i do anyway) and yeah, this may sound cruel, but reading these posts of other people getting in bad moods kind of comforts me, because then i know it is not only me who feels this bitter, and that it is a normal way of reacting....

to answer ur question, when i started on metho, i asked my rheumy if there are any long term side effects, and whether it interferes with fertility. he said, as long as you are not taking med when you are trying ot get pregnant, or whilst you are pregnant, it shouldn't be a problem...

good luck with it all, your boyfriend sounds great-lucky you


feel good

Shelly
x

[Lily]

((((((((((((((((((((Tam)))))))))))))))))))) :hugbetter:

Thats all I can muster today, but I just wanted you to know how special you are to me :love: and to all who come in contact with you :) I hope your symptoms settle down soon and hang onto that man of yours he sounds pretty special to me :) ;)

love
Lily

[Tam@->---]

You are special to me also xoxoxoxox

Yeah I think he is a keeper!:)

[lin]

((((((((((((TAMMY)))))))))))))))) Hello me little ketchup girl :hehe: hows y gooing........... I can see not to good hun, you got a lot on your plate, and im sorry you got this lot going on right now,

So you got a nice fella hey .well iagree with Lily you hang on to him , i hope your pain gets under controll soon lovely, I miss are little chats

Do keep in touch Big (((((((((((((Hugs)))))))))))) Comming your way

luv Lin xxxx

[Lily]

How are you feeling today Tam? :hugbetter:

love
Lily

[debralee]

(((((((((((((((((((Tam))))))))))))))))))

Ouy are never complaining here.........we are all here to support each other during our down times. It helps us all to know that we ahve a safe place to vent to loving and caring poeple that understand what it is like. We ahve all at one time or going through at time now that we need to vent and have the support of our friends. :grouphug2:

I am sorry to hear that ouy have been feeling so poorly but I'm glad that ouy rhuemy is on top of things. As mush as oyu hate going back on the methotrexate hopefully it will feel better and then ouy will be up to spending more quality time with oyru fellow.:yahoo:


Hope ouy are feeling better soon!

Love,
Deb
:Pansy:

[Tam@->---]

Feeling ok mentally anyways... physically I'm abit exhausted but I shouldnt complain cause unlike others i am still working, although I am thinking i may need to reduce my days.... but i will try to get through this abit longer b4 i resort to making that decision.
I really am fortunate to be seeing such a lovely guy, he never thinks me silly about my feelings on matters.... we were speaking today and he was asking about up coming appointments with specialists drs and regarding medication...... me being me said he really got more than he bargained for dating me .... but he genuinely cares and isnt fazed one bit! So I really shouldnt be concerned about that aspect, just focus on getting it all sorted and under control. I guess I just concern myself with that aspect cause I have always pushed people away that got close cause it seemed so complicated and i dont want that this time and hope I dont do it like pfff i dont know!
I'm sure it isnt as difficult as I make it sometimes i just worry and think too much about everything I do my head in, which really doesnt help in regard to focusing on getting better!!

Anyways Hugs cherubs )))))))))))))))))))))))))(((((((((((((((((((((( Ya such lovely folk and I appreciate you guys allowing for me to be an outlet know matter how rediculous it may be!!

Tammy

[pukekos]

Hi Tammy,

many hugs ! from me and the hubby

I say grab this by the tail and run with it. No telling what the future holds - live for today and the time the two of you have together. If he can deal with everything wonderful - if it turns out he can't then you will have the great memories of the time you have together. Be honest, let him see the real side of being a lupie - you never know he might just be the guy that takes it all in his stride and wants you for you - lupie and crazy and beautiful and fun and generous and all the things that make you the wonderful person you are.

hugs
Pukeko

[georgee]

hi tam wish you the very best your partner loves you for what you are and who you are Dont do his thinking for him talk to him about your fears for the future youll find he loves you warts and all excuse my terminology but its a mans point of view take care george

[Lily]

Hi Tam,

((((((((((Tam)))))))))))

I'm sure it isnt as difficult as I make it sometimes i just worry and think too much about everything I do my head in

Dont worry we are all guilty of that at times ;) and it doesnt matter how we try to talk ourselves out of it it creeps in every now and then. The fact you are aware of it is good, it wont sneak up on you and take over :p Don't let those niggling feelings overshadow the good stuff.

As Lisa said go with the flow, enjoy this time and see what develops, he hasnt run away yet and you are building a relationship, that's worth working on :) Have fun................ps I wanna be 28 again :hehe: :lol: :hugbetter:

sending hugs,

love
Lily

[raggedyann1]

Tammy,

The others have said it well. Obviously this chap cares for you or he wouldn't be looking up things about lupus. I have RA and Lupus as does our friend in Canada. The good thing is many of the drugs work on both diseases. I don't know if you have the dsdna anti-bodies but if you don't then there are other medication options available. Arava and Enbrel. I am not sure on the Arava if you have to be dsdna negative or not. I will say that they have both helped me. The Arava for awhile and now I am on Enbrel.

Next about menstrual pain. I wonder if you have endometriosis. When is your appointment with the gyn doctor? That would be important to identify and deal with now. I know that birth control can help with endometriosis in some patients. Who prescribed the birth control? My rheumatologist told me at my last appointment to stop a medication that my pain doctor prescribes. Long story short my body complained and she told me to let her deal with my pain issues. Maybe your thought is a good one to stay on the birth control until you see the gyn doctor. At least you could ask over the phone what they suggest.

Hang in there sweetie. You needed to vent and you know it is ok for you to vent. We all have our own unique circumstances and you should never feel like you aren't sick enough to complain. That is just bull pucky.

Luv ya,
Karen

[Maxx]

Tammy,
You should never feel bad about venting here. Who does not vent here? That is one of the reasons we are here, to support each other.
I am glad to hear you are happy seeing someone special.:)

I really wanted to see if you had made your OB/GYN appointment. I hope you have. I had a lot of trouble with my menstrual periods also. Somewhere the other day I posted about how I would bleed a lot.
I would bleed 10 days, stop 10 days, bleed 10 days etc......:eek:
I never knew when I was having a period. I would havine cysts on my ovaries, which were causing pain. When they put me on birth control, I would bleed for at least 8 days of the 28!
Anyway... You should really get in to see the GYN. & see what they can find out.

(((((((((HUGS)))))))))

deb

[Tam@->---]

Thanks cherubs and hugs to you all!

I am booked in to see the gynacologist June 5th! and I am continuing to take the pill until then, with half and aspirin in my concoction of pills! The GP prescribed it for me, and I had to go and have an ultrasound as she said maybe i have Polycystic Ovarian Syndrome, but I havent been able to get in and have the ultrasound yet, will make a concerted effort to have that done too as well, but may wait till i see the gynocologist and he may decide something else! wait and see!
Went to the gp Wednesday eve and she prescribed me some pain meds till the other beds start working.... It is tramal 200mg slow relase, and she told me to take panadol or panadeine fort as i need it! For the first time in ages I felt semi human yesterday... my colleagues kept commenting on how i had some colour in my face again and not looking so grey and bluh! But i truly just felt a different women and consequently i'm abit exhausted today, but it is Saturday so I can rest and not feel bad about it!but I also wake about 4:30 usually to take my medication so they have kicked in some b4 i get up for work.... this morning i have only just taken them which may why i'm also feeling abit off! Havent given them time to kick in!

Thank you each of you for your support and advice i really appreciate it!! I am indeed a very lucky ducky to have the support of such beautiful people!

HUGS you lovely gorgeous folk!!!

Smiles Tammy xoxox

[Lily]

Mwahhhhh back at you Tam :) :p

I had to go and have an ultrasound as she said maybe i have Polycystic Ovarian Syndrome, but I havent been able to get in and have the ultrasound yet, will make a concerted effort to have that done too as well, but may wait till i see the gynocologist and he may decide something else! wait and see!


I would try and get the ultrasound prior to seeing the Gyn, it may well give them the heads up on what's happening, and save your some time in the long run.

Take care my friend :hugbetter:

love
Lily