New Member: UDCT ,Raynaud's,iron deficientcy anemia, low white bloody count

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Mish0609
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 10/6/2009 12:25 AM (GMT -7)   
Hi Everyone,
 
Its taken me a little while to build up the courage to actually write something on a forum.
I always read them and think that there are people out there so much worse than me, what right do I have to complain...
 
Im a 26 year old Female that feels like she has just been sick all her life, It was always one thing after the other, Chicken pox, Glandula, Rikettsia, chronic fatigue, peri-tonsillar abcsess that burst... you name it Ive had it hahah.
 
After years and years of doctors telling me that there was nothing wrong and was I sure I was eating right...(Im a person that has always been active, eaten well, dont drink much and never smoked) so you can imagine how fustrating it was.
 
Finally with all my symptoms of swollen joints, rashy skin, extreme fatigue, aching muscles, extremely stiff body in morning, always very thirsty, headaches and so on. They tested my ANA levels which was positive, my white bloody count is always very low and in the recent 12 month my iron is also always low.
 
I suffer from Raynauds as well as the above symptons so I was finally diagnosed with UCDT. I also find it very hard to explain to people what it is, its a bit of this and a bit of that :). I dont feel like my Husband understands and I know its also hard on him always having me sick with one thing or another... be it upset stomach, aching body etc.
 
As I am naturally a very energetic person who loves to be active I find it very hard being limited with what I can do, it tends to upset me and get me down. Over the past 24 months I have started to listen to my body a lot more and when it says rest I have to rest. I work as a Marketing Manager, study part time and take care of a house hold which seems to get the better of my every few couple of months and then I am wiped out for another couple of months.
 
Thanks for letting me open up to people who understand, I feel a bit silly as I know that there are people on here a lot worse than me and I dont want to seem like I am complaining.
 
I hope everyone is feeling well today .
 
Mish0609

Mish0609
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 10/6/2009 12:27 AM (GMT -7)   
Oh I forgot to ask, how have the females on here found trying to have babies? any feedback?

thanks
Mish0609

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/6/2009 1:56 AM (GMT -7)   
Mish, welcome to the forum. Please don't discount the fact that your autoimmune disease is not as "bad" as that of others. This forum exists for all of us, regardless of the seriousness of our conditions. I'm a senior citizen and have had my share of illnesses over my lifetime, including cancer, twice, yet nothing sent me in search of a support until I became ill with lupus. UCDT is a difficult and confusing disease, and hopefully you'll find the support you need here, plus answers to the many questions you might have. I often think there's nothing about lupus that I don't know, yet I frequently learn new things here. Don't be afraid to vent, either. I hope you can eventually find a way for your husband to understand your illness. Perhaps taking him to your doctor's appointments?

Complain all you want.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 10/6/2009 7:24 AM (GMT -7)   
Welcome to HW - where you never have to be afraid to ask questions, brag or complain!

One way that seems to help with getting others to understand is by having them read the essay at www.butyoudontlooksick.com

The change from being athletically active to being an (in-the-shade) bench warmer is a huge mental shift. Just that alone can bring on depression that makes me tired (on top of lupus tired!). Plus the idea of a chronic illness -- even for those who end up having long remission or "inactive" periods, the initial shock is a huge one. Sometimes these adjustments seem way too much to bear.

Take care,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 10/6/2009 9:38 AM (GMT -7)   
Welcome to the forum. Don't feel bad about not being "as sick" as some others. No matter the severity of our disease, we care about others or we wouldn't be visiting here, and we certainly understand your frustration and anxiety. I'm so sorry you are dealing with this. I can't imagine how hard it must be to manage a job, a husband, a household AND go to school part-time. Hang in there.
 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 10/6/2009 10:02 AM (GMT -7)   
Hi Mish and welcome to the forum! I was initially diagnosed with UCTD and after one year
my dx changed to MCTD. I can tell you I feel no differant with a new diagnosis.

Learning to pace yourself is tricky, but it helps to be active. I have learned if I don't
get some exercise my muscles become stiff and sore, and I hurt all the more. It is
great that you are listening to your body, that is so important.

Pat's suggestion of bringing hubby with you to the doctors was a good one. My husband
is very supportive but he thinks I am feeling great if I am not complaining. He doesn't
understand that I am in pain everyday. I just choose not to complain all the time.

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


Mish0609
New Member


Date Joined Oct 2009
Total Posts : 10
   Posted 10/6/2009 10:02 PM (GMT -7)   
Thank you Everyone,

I really apreciate your responses. I can see this site is going to be a great help!!

once again thank you.

I hope you are all well today.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 5:47 AM (GMT -7)
There are a total of 2,735,803 posts in 301,336 threads.
View Active Threads


Who's Online
This forum has 151439 registered members. Please welcome our newest member, owillie.
187 Guest(s), 10 Registered Member(s) are currently online.  Details
Psilociraptor, summer16, Loutucky, reminder, Ineedhelp, U B Tough, Scarecrow, ChickenArise, Not-there-yet, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer