Newbie with a long story, lol!

[tiredofbeingtired]

Hi Everyone,

I'm new to this site and I really have to say that it's helped me tremendously!  I'm an American living in Germany, I was married to a German but we are separated now, I would love to go back home but with having this disease and excellent health insurance here it makes it impossible to go back home only to face a life of having to raise a son alone and be sick at the same time, I never know what tomorrow will bring, I'm sure you ladies know all about that! 

First off, I don't know if MCTD is the correct diagnosis of what I have, I have done extensive research and it seems to me that it's more along the lines of Lupus, I don't know, maybe someone here can help me, so here it goes, the novel begins!

I was born RH- and have to have a complete transfusion when I was born, I was very sick at birth with Liver problems and anemia, luckily no long lasting damage!  This is when the hives begin.  My mother told me I always had hives when I was infant and I remember having them all through childhood, the Doctors explaination was allergies....Benadryl!  I was always fatigued as a kid, I remember being sick a lot and sleeping a lot more than my childhood friends.  By the time I reached High School, the hives would come twice a year, but as I got older they started out as hives only to settle and swell in ALL of my joints and had a lot of pain, which isn't normal for an allergy.  This went on from the age of 17 to the age of 28.  I don't get the hives anymore, but now more complicated problems.  I had a miscarriage at the age of 25, I was taken to the ER, they took blood and told me I had Leukemia, sigh!  I had to go once a week for 2 months for blood tests until my blood went back to normal!  I had anemia a lot, but mostly just flares of hives and severe fatigue.......until now, 


I am ashamed to say that I haven't gone to rheumy yet, tried once, but the day of my appointment they went on strike at the University....just my luck!  I was sick last Jan when I went to visit my dad, had a 104 temp for 5 days, went to the clinic there everyday, fever would't break, doc said if what he wanted to try didn't work, I had to be hospitalized and we were probably looking at meningitis!  Gave me 8x200 mgs of Ibuprofen and that knocked it out, but then the hives came and had to go on prednisone......grrrr!

Ever since then, I have been going through these bouts of swelling, I mean realllllly bad swelling.  My whole body swells, internally as well.  I get indigestion, acid reflux, I feel like I am being crushed to death.  I had another "wiggin out" episode two days ago, which only happens when I am swollen like a balloon, could this be my kidneys aren't functioning and could this disease be affecting my brain.  When the swelling goes down I am completely normal, I look back and think, what the hell was that.....lol!!!

I would appreciate any advice anyone can give me, I am in this country alone, there isn't much support here and I think it's about time I starting reaching out and getting help!!!!  I have a hard time walking, when I don't have swelling I sound like I am walking on broken glass, my bones just go crunch crunch!  Stomach Problems constantly, Pelvis curls in when I stand up, the pain is awful, Raynauds, anemia, heart problems, clots, terrible time swallowing food....I don't know where to begin!  I'm worried that when I go to the Rheumy it will be the same old story......It's worth a shot, cause this isn't going to get better!

Thanks for listening, sorry it's so long.....

[Adminஐﻬ]

Hello and welcome!!!
I'm in California, I sure wished you were here, as I could babysit for you so you could go to the Drs. here, but as for insurance, I understand you having to stay there.

What a bunch of crap (that's saying it mildly) that you have been through!

We have a few members here that swell up just like how you discribed Holly SOng of Hearts is one of them.

My Lord your rashes are the biggest clue, why didn't anyone send you to a Dermatologist so he/she could at least rule out something.

I'm grateful you have joined us, as you are not alone.
Please post often, I wish I could say I had experiance your swelling andthe rashes you go through, but I don't .. But I'm here everyday
My name is Kathy, it's nice to meet you!
  

[Debby]

 

[Lupiex5]

Hi TiredofbeingTired!!!

  Glad you decided to join.  They have helped me alot here, it seems like theres always someone who's been through something you have, and they are always willing to offer advice.  You actually taught me something though.  I have had hives and strange rashes my whole life, but nobody ever knew why.  My parents always thought that I was allergic to the laundry soap, or bath soap, but as i got older that didn't prove to be true because I had always thought I was allergic to Tide, and my husband was using it and I had no reaction.  Some doctors thought it was nerves, and when it happened when I was pregnant, they said it was rash alot of women got when they were expecting.  I also had 2 miscarriages with no real explanation, but I had 5 children, complicated pregnancies, but they're here.  My jints pop and crack really bad also, especially in the morning, unless I am suffering from inflammation.  mine is nowhere near as bad as yours though.  My knees will puff up, and there is some inflammation abdominally, i can tell because I wear a different size pants at that time, and I am nauseated, but never my whole body.  You poor thing!!!!  Are you staying because Germany has community health?  We should have it here, but we are now the least evolved nation of the free world as far as healthcare.  You should see a rheumatologist, and Kathy knows more about this, but I don't think everyone diagnosed with lupus or MCTD tests positive for the RA factor.  Hope you feel better soon.  My OB says Germany is beautiful, what is the climate like there?  That also plays a role in how you feel.  Where are you from in the states?

Wishing You The Best
Margi

[tiredofbeingtired]

Hi Margi,

Sounds like what I go through.  Swollen is my middle name, lol!  They always assumed it was allergies for me too, but when my regular doctor looked at my body about 5 days after the hives started, they settled in the joints, the puffy face, and sausage fingers were the indicators.  Went to the dermatologist, and he said, this isn't a problem with the skin, especially if simple antihistamines won't work.  They put me a predni, had to do few rounds of it cause they kept coming back.  After they were gone, i noticed that my joints were crunchier, thats the only way to describe it!  The swelling is the worst for me, I get so bad, I feel like I am a tick about to pop.  The pressure in my head is so bad, I can literally hear my blood flowing and my heartbeat, BP is normal.  They have me on BP meds now, it at least helps with the swelling, without them, I urinate maybe twice a day.....sigh!  Im lucky to get those, I know something is wrong, but no one will listen!  I had the same problem, a pair of pants that fit me one day I couldn't dream of getting them on the next....

The health care here is ok, they have National healthcare but it's becoming more of a business than it is about helping the patient, but thank god I have it, without it, I don't know where I would be.  The weather here is a big factor, Damp, Verrrrry Damn, did I mention damp?  A lot more pollutants in the air as well!  Visited the Alps recently, we took a ski lift to the top and I have to say, there was nothing better than the high altitude, I don't know why, but I felt great.  My sister is in Colorado, she went to the mountains there and said the same thing, so there must be something to it.....she hasnt been diagnosed, but has arthritis!

Does your swelling cause your hands and feet to fall asleep fast?  I wake up in the middle of the night with my arms asleep and in excruciating pain.......does this ever let up?

Thank you soooo much for being supportive!  It really helps to be able to talk about now, I kept it in and tried to get through it, but now I know I need help, even if I can only vent a little!

 

[3sisters]

   Tired of Being Tired~

Glad that you found us. I'm sorry that you are having a rough time with your health.

Some patients don't test + for Rheumatoid Factor. Most MCTD patients will test + for the anti-RNP antibodies. About 1/3 of SLE patients test postive for the RNP antibodies.

I don't know if you are currently taking prescribed meds for inflammation, but if your morning stiffness, swelling and pain lasts more than 30 minutes daily you should discuss this with the doc. Rheumy's use the length of morning stiffness as a barometer for disease activity. Running low grade fevers (below 101) along with the signs and symptoms that you are describing would indicate inflammation. You may benefit from some other meds. Sometimes my wrists swell and stiffen up to the point of flaring my carpal tunnel, and it does wake me up at night. Pain during sleep does wake me and distrurb my quality of rest.
Discuss this with your doc also. Also, the balance act of finding the right combos of meds is normal, frustrating and part of the experience of many patients. I am wishing you  positive results  with the docs to improve your quality of life.


Please check out this Podcast, from our site:
http://209.242.151.6/mills/pa_1107_lupus.mp3

Take care, keep us posted! Wishing you quality days and nights!
Gentle Hugs, Kim

[tiredofbeingtired]

Thank you everyone for your support!!  Margi, I'm from Pennsylvania....heehee!!!  I love this site, it's so informative and so helpful, you ladies have done a great job!!  It has really enlightened me....   I wish I could sleep like this icon!

[Adminஐﻬ]

Thank you everyone for your support!!  Margi, I'm from Pennsylvania....heehee!!!  I love this site, it's so informative and so helpful, you ladies have done a great job!!  It has really enlightened me....   I wish I could sleep like this icon!

Hi tired if being tired, 
My hubby's family is from PA. (Schulykill County).
So I am familiar with all the Pennsylvania Dutch talk, foods, recipes, etc.
Every year at the holidays we order Weavers German Balogna. Expensive but very good with the spice hot mustard.

I hope you are feeling good today and being pain free. Even if it's just one day out of the week (for a good day)
Thank you for the compliment on the site!!!   

[tiredofbeingtired]

I was born in Fayette County, I miss it a lot....I get back once or twice a year, unfortunately I suffer from allergy attacks when I do, but it's worth it....

Thank you so much for all the support!  I'm going to post some questions I have about Lupus and MCTD in the next couple of days.  I was at my regular docs and I asked her if this is Lupus or MCTD....she said she isn't sure yet and that we should wait and see what the Rheumy says....Its so hard explaining what MCTD is, I just tell people its kinda of like Lupus, most STILL DO NOT know what Lupus is.....we definitely need more awareness out there....This site is a great start.....

 

[Adminஐﻬ]

I was born in Fayette County, I miss it a lot....I get back once or twice a year, unfortunately I suffer from allergy attacks when I do, but it's worth it....

Thank you so much for all the support!  I'm going to post some questions I have about Lupus and MCTD in the next couple of days.  I was at my regular docs and I asked her if this is Lupus or MCTD....she said she isn't sure yet and that we should wait and see what the Rheumy says....Its so hard explaining what MCTD is, I just tell people its kinda of like Lupus, most STILL DO NOT know what Lupus is.....we definitely need more awareness out there....This site is a great start.....

 

Hello tiredofbeing tired!
Glad to see you popped in today. We sure do need more awareness. I posted my first You Tube video, I'll be making more in the future for awareness. Ever little bit helps.

Hope you feel good this week. If not, we understand    

[tiredofbeingtired]

That's really cool to hear you did a video!  Is is posted on this site?  Can you send me or post the link?  You are really brave to do something like that, I was disappointed to see so few videos available on Lupus and other Auto-Immune diseases, so many people are effected by this and not a whole lot of information.  Sites like this are so important because they allow people afflicted with this to get the support they need, nothing is more distressing and disheartening than hearing people preach that you are just lazy, crazy and its all in your head, nothing better than that to make you feel absolutely worse.....sigh!  Some people just don't get it!

I hope you are feeling good and having a pain free weekend and a pain free week!

 
I'm so envious of this little icon, lol!

[Adminஐﻬ]

That's really cool to hear you did a video!  Is is posted on this site?  Can you send me or post the link?  You are really brave to do something like that, I was disappointed to see so few videos available on Lupus and other Auto-Immune diseases, so many people are effected by this and not a whole lot of information.  Sites like this are so important because they allow people afflicted with this to get the support they need, nothing is more distressing and disheartening than hearing people preach that you are just lazy, crazy and its all in your head, nothing better than that to make you feel absolutely worse.....sigh!  Some people just don't get it!

I hope you are feeling good and having a pain free weekend and a pain free week!

 
I'm so envious of this little icon, lol!

I actually have made 2 videos now. I'm working on a third one to be posted later today I'm working on the music right now

I keep all our related links on the front page from My Space to You Tube.
Just scroll down towards the bottom of our front page.

http://www.youtube.com/profile?user=LupusMCTD

[tiredofbeingtired]

WOW, Right On, you go girl, great job!  I noticed a picture of one of my myspace friends on there, she has the dearest heart and kindest words!  I will join the group as soon as I can reset my password on YouTube!!!  Keep up the good work...what a positive way to vent the frustration of this awful illness!

 

[Adminஐﻬ]

WOW, Right On, you go girl, great job!  I noticed a picture of one of my myspace friends on there, she has the dearest heart and kindest words!  I will join the group as soon as I can reset my password on YouTube!!!  Keep up the good work...what a positive way to vent the frustration of this awful illness!

 

Thank you for the warm compliments, that gives me the strength to keep on being creative in ways I can only physically be involved.
(sitting & learning how to make crafty things on the computer)

As always, I'm open for suggestions for any videos (camcorder or the storybook style) to bring awareness.

I am going to be updating the one video with more  photos. If you have a photo of yours you wish to have me include, email it to me at
LupusWebsite@aol.com

Thanks again for the compliment!