WOW Time Fly's!!!!

So it's been like MONTHS since I last posted... Yeah I know. I started this to share my story & to help me come to terms with my Lupus. But over the past few months so much has changed for me... In my last post I told you about being pregnant. Well I'm 30 weeks along today with a pretty healthy little boy!!! :-) I have about 10 weeks left in my pregnancy. Both the baby & I are doing very well. We've had some craziness over the past few months, that's for sure! With all the extra special tests that all my doctors want to run & the special ultrasounds I feel like I'm always being poked with needles! I think the hardest part of everything was all the changes with my meds. No more anxiety or pain meds. But still taking my Planquinal for my Lupus. It was a rough go there for awhile... But things are getting better. I'm just waiting for the joys of being able to take my pain meds in a few short months!!! But every day I have the joys of feeling Little Callen wiggle, kick & punch me. After giving up the dream of never having kids I never thought I would ever get to experience these feelings. I am sooooo happy to become a mommy!!! It's really a dream come true for me. I wouldn't trade this for anything in the world! I am fully aware of all the risks that I have coming. I have some great doctors that have really talked to me about everything. I'd be lieing if I said I wasn't still scared of what could all happen. But I know that all my doctors are taking every precaution for myself & the baby. So hopefully everything will all keep going smoothly.  

OH The Shock & The Chest Pains...

So over the last few months I have been having a lot of pain in between my ribs. Being as it is that I have MCTD, (Mixed Connective Tissue Disease) that is what I had thought the pain was from. So I lived with my heating pad for a few weeks. Hey whatever helps right??? One day 3 weeks ago, I start having some sharp shooting pains on the left side of my chest around my heart area. Okay, little freaked out! Took a little trip to the ER to make sure all was good with me.
I get rolled into the back & have all the lovely EKG stickers slapped on me. Oh how I hate them!!! The doctor tried to touch my upper chest & I shrieked in pain. EKG comes back normal. They stole 6 vile of blood from me for all kinds of test. Nothing new there... Oh the lovely pain meds, oh how I love thee! I could have kissed the nurse as she pushed 2 syarnges of Dalton in my IV. Pain was gone, for the first time in weeks!!!
The doctor comes in & says that all my blood work is back. He asked why I was taking Prenatal Vitamins. I said because my doctor said they were better for me then just regular One A Day Vitamins because of my Lupus. He then goes on to say, Well its a good thing you are taking them, because you are pregnant. WHAT?!?!? I was in total shock!!! He said he wanted to run another blood test to find out how far along I was. Then left the room.
I busted out in tears. How could this be??? I had been told that I most likely would never be able to have children. I gave up my dream of ever becoming a mom a few years ago. I had accepted my fate & was okay with it. So I sat there in total shock. I thought of all the risks that I would be facing. I'm 35 years old, I have a compermised cervix from having Stage 3 Pre-Cancer Cells removed 5 years ago & I have many Auto Immune Diseases. I'm as high risk as they come for a pregnancy!!!
So it's been a few weeks now since I found out this wonderful news... I've called all my different doctors to find out which of my meds I need to stop taking or needed to be adjusted. I set up appointment's with an OB/GYN to start my prenatal care.
I wish that I could say that I've come to terms with being pregnant, but I haven't just yet. I'm VERY scared & worried that something bad will happen to the baby. Yet slowly each day it get a little easier & I worry a little less. Not many people know of my pregnancy. I don't want to many people to get all excited & then the worst happens. So I'm waiting awhile to let the news out. I know there will be people that will be very happy for me. But I also know that people will worry if I'm going to be healthy enough to carry the baby to term. Only time will tell. Yes its very hard to withhold this new from my very supportive family & friends. But it's what I have to do. I really don't want people to worry more about me then they already do because of my Lupus.
As of today I am 7 weeks & 2 days along. My due date is Sept. 23, 2012.
I'm still waiting for it all to feel more real to me. I'm sure that it will soon. At least that's my hope.

The Screaming Body

It seems that my body is always screaming at me. For a long time I ignored it. Now it's very hard to not listen to everything that it keeps saying... Some times it's the same things over & over & over again. Most of the time it's about the pain. Always about the pain... I'm 35 right now, but there's days that I feel like I'm 80. My joint's are pretty 'trashed' after 8 years of gymnastics as a kid. The arthritis has set in really badly in the last few years. My knees & hips seem to be the worst. When I am in a lot of pain or am very tired I have this 'funny' walk as my friends call it. Kinda looks like a penguin walking. Now my hands are starting to get pretty bad too. You never realize just how important your thumbs really are till you can use them. Some of the most simplest tasks can be hard when your damn thumbs don't want to work. Writing with a regular size pen or pencil is difficult. I always have to make sure that I have a "fat" pen in my purse to sign anything or to fill out any paper work. Some part of my body is always in some kind of pain. I have a very high tolerance to pain, so if I'm whining that something hurts it REALLY hurts! Weather seems to effect me more now then ever. I know when a storm is a brewin... The colder it gets the worse I feel. Keeping warm is always a challenge for me. I have worn mittens in the house just to keep my hands warm! Thermal socks are normally found on my feet. Sometimes the pain gets to be so bad & all I want to do is curl up in a ball to cry my eyes out. Not that crying is really going to help, but it's the only thing you can do because everything hurts so badly. I spend a lot of time laying on the couch or in bed because my body hurts. A heating pad has become my best friend. Not only does it help take some of the pain away, but it also keeps me warm.
Some days are better then others... But some days I would love to just have a pain free day!

Pain & Stress

So the 2 first things that I learned about Lupus #1 it's gonna hurt all the time! #2 stress is the worst thing you can do, since it only makes you feel worse.
So guess where I am today? Stressed out to the max & suffering in a lot of pain!
I haven't slept well in about a week. I've been having these pains in between my ribs along my sternum. It feels like I'm being poked all the time. The pain makes it hard to get comfy in bed to fall asleep. Then only to wake me up several times during the night. I'm even having trouble taking my daily nap too for the same reasons. The pain meds help some, but not always.
Being in this much pain makes me stress out. Only because it hurts so much & all I want is some relief! It feels like a bad Merry-Go-Round ride... Can't sleep because of pain, pain increases, stress level goes up higher, feel over tired & super cranky. Round & round I go... I sooooo want off this ride!
Everyday I hope to wake up & feel a little better then I did yesterday... It's all wishful thinking. It's even harder to feel better when you don't sleep enough because of the pain. Sleep is when the body repaires it's self. But I'm not sleeping so no repairs are being done.
I remember how I could function on just a few hours of sleep. I did it for so many years.  Now it's different. I need that sleep so that I feel somewhat like a person. I know I'm sick, but that doesn't mean I have to live like   a person who is sick.
Is it wrong of me to just want to be a little pain free so that I'm not so stressed out???

The HOTTIE Doctor!!!

I walked into the GI Specialist office nervous & scared. I had a great feeling that I would have to have the Upper GI Test (EDG) done to find out what is really wrong with my stomach. My name was called by this extremely HOT guy! Turns out, he's my doctor! I tell him all the issues that I'm having with my stomach & that I have Lupus too. His eyes widened with great concern for me. That 1 look gave me great hope, because he knew that I had special needs that needed to be addressed. He asked about having any diarrhea. Do you know how hard it is to look at a really HOT guy & talk nonchalantly about poop? NOT EASY!!! Now it's time for him to start the exam part... Just tell me where & when it hurts, he says. First poke & I groan! But he keeps on poking to see where else my belly is tender. Finally he says, Could be an ulcer or a Heyerdahl hernia., the only way to find out for sure is to do the Upper GI test, plus I'd rather be safer then sorry if it might be related to your Lupus.
He orders some pre-surgery blood work & sets up the surgery for a few days later. I leave the office drooling.
The next morning I go to the New Clinic to have the blood work done after a night of fasting. (Not a good idea to be around me early in the morning when I haven't had my coffee!) Thankfully my awesome step-mom took me out to breakfast & got my 'coffee leavels' up! Plus I needed to eat ASAP so I could take all of my morning pills.
Two days later I'm at a hospital early in the morning with no coffee in me & only my anxiety med in me (didn't need to freak out any more then I already was.) I get all checked in & peed in the trusty cup. Because HEAVEN FORBID they trust my word that I'm NOT pregnant! I get to put on one of those VERY fashionable green/blue gowns. Meet the cute guy who's gonna push the sleepy drugs & Dr. HOTTIE goes over what's going to happen.
Alright, sounds good to me! Lets get this party started! I'm hungry & want some coffee! I told Dr. HOTTIE.
Dr. Sleepy Drugs tells me to roll on my side. A nurse shows me the "bite guard" that will be used so I don't bite the camera tube or Dr. HOTTIE. I tell her, But I want to be able to bite him! She gave a little giggle as she strapped the guard around my neck.
Next thing I know I'm looking at my room mate. The whole thing took less then 20 minuets! Dr. HOTTIE comes in & tells me that he didn't find a ulcer or a hernia. But there was a small spot that was very inflamed & he did a small biopsy of the area. He wanted to make sure the area wasn't the start of SLE Lupus. I was told to rest for the rest of the day.
When I got home I passed out on the couch for a few hours. It would have been just WAY to much work to walk up all the stairs to my bed. After waking up it seemed that all hell broke loose! I was still fighting off all of the effects of the sleepy drug. Things just weren't making any sense to me! My brother was babbling something I didn't quite understand. But did hear & understand that something was wrong with him & needed to go to the ER. Thankfully our room mate drove my brother. I later got a call to let me know what was going on with my brother & that I needed to get a hold of of our dad to let him know. I called a friend to drive me out to the hospital, since I still was a little goofy from the sleepy drugs. Got my brother all settled for his night stay in the hospital, then came home ate dinner & went to bed.
It was one hell of a day!!!!

Getting Sick

It's weird to know that I had to get sick to find out that I am sick. June 2011 was the start of the Crazy Roller Coaster Ride. I was doing some "summer cleaning" of my in closed back porch. The plan was to remove EVERYTHING & start fresh to make a nice place to sit & hang out with family & friends. Things were progressing nicely. Then the coughing started. Being that I have Asthma & bad allergies to dust, I didn't think much out it since it had been YEARS since the back porch had been cleaned out. That night the coughing got worse. It turned in to the wonderful "bronchitis bark". The next morning when I woke up it felt like my lungs were on fire. It hurt so much to breathe. I called my dad & said I NEED to go to the doctor. Off to Urgent Care we go.
As the doctor is looking me over he notices the 'rash' on my face & ears I've had for the past 5 years. He asked if I knew what it was. I said No, but it seems to looks like Eczema to me. He said some of it does but the one across the bridge of your nose concerns me. It looks to be the start of Lupus.
That's about the time I started to freak out! I had heard of Lupus before but didn't really know anything about it. I was scared. Being as I have no health insurance the doctor referred me to a local low income clinic to start the process of being tested to see if I had Lupus.
So I head home & go online to find out what Lupus was & what I was in store for.... Lots of blood work test, special doctors, etc etc. Then I looked at the list of symptoms. I had almost every one that was listed!!! I had always had a different answer for each of the symptoms. But if you mush all of them together, Lupus seemed to be the right answer.
I walked into my appointment at the Clinic very informed. (I was the kind of patient all doctors fear!) A full blood work up was ordered. (Knew that was coming) Then I was sent on my merry little way without very many answers. The waiting started for the blood work to come back.
I would freak out a little more each day. I was scared to find out what fate was about to hand me. I was already pretty stressed out at the time, helping plan my dad's upcoming wedding. Finally the results come in. They asked for e to come in for a urine test to check to see if  I may have a bladder infection because my White Blood Cell count was pretty high. I reminded the nurse that when the blood work was done that I was taking Prednisone for the Bronchitis I was still trying to get over. Well that would explain the high White count. DUH!!! Then I was told they would rerun the blood work in a month when all the Presnisone was out of my body. Okay sounded good to me. Then I asked about the "rash" on my face. The nurse had no answer for me, but would talk to the doctor & get back to me.
After a week of waiting a nurse gets back to me. The doctor wants you to see a Dermatologist. (Knew that would be coming) She goes on to tell me that the Clinic office manager will set up the appointment & let me know when and where it will be since there isn't a Dermatologist on staff at the Clinic. It takes almost a month to hear from the office manager! But I had a August appointment set. (That was great news to me since dad's wedding was at the end of July. I knew that I would have to have a biopsy done & didn't want to look bad in his wedding pictures.)
The big day of going to the Dermatologist came. I was sooooo nervous! But she turned out to be the most wonderfully caring doctor! Of course she did a biopsy of the Molar "Butterfly" Rash on my nose. I walked out of her office with 2 sexy stitches & my head held high with my Dermmy's support of getting this all figured out for me. That was the first of the 3 biopsies that I had done over the next 2 months. Each visit with her was a new experience. She was fighting hard to get the Clinic to send me to a Rhumatologist because of all the joint pain I was in & also so that she could give me medication to actually treat my DLE (skin lupus) without messing up any of the blood test that the Rheumy would need to run.
I finally go back to the Clinic to get something to help with the joint pain & all the anixixty that I was having. The doctor still wasn't seeing the need to send me to a Rheumy & wanted to treat my pain "in house". I wasn't  happy with his choice to treat me in this manner, but he's the doctor. I was just happy to have something a little more powerful then just regular Tylonal to kill the pain.
Things were going alright... Then the stomach pains started. I thought I was going to DIE!!! Sadly the pains had gotten worse the night that I had biopsies of my cervix done that morning. (I had Stage 3 Pre-Cancer Cells removed from my cervix 5 years ago) I couldn't sleep with all the pain I was in. So off to the ER I went. The good news was I got GREAT pain meds! The bad news was I might have an ulcer. ER doctor said that it was from all the stress of finding out about having Lupus. I could agree to that answer. So 2 new pills to take to help fix my stomach.
Back to the Clinic for a check up for my stomach & to see how the anxiety meds are working. Now let me remind you that I'm still in a lot of joint & muscle pain. Doctor isn't to concerned over the stomach pain. But does finally agree to send me to a Rheumy. That was the good news. The bad news was they don't have a Rheumy on staff at the Clinic. So I need to go to Loyola Medical Center in Chicago. (That's over 50 miles away!)
On Halloween I make the journey to Loyola. I was excited!!! This was the 1 doctor who was going to help me the most. After answering a lot of questions & having a exam of my joints I was told that I have Fibromyalgia. Plus she wanted to rerun all my blood work to get a new ANA count. So after giving up 7 viles of blood I head home to wait for the tests to come back.
2 weeks of waiting & the nurse calls with all the results. My ANA test still is negative. But some of my other tests came back out of range. But the good news was I had a new disorder, Mixed Connective Tissue Disease (MCTD).
So I had yet again had something new to accept that Lupus tossed my way. Okay, fine, it's all good. A few weeks go by & the pain in my stomach becomes worse then the last time. Plus this time I'm so nauseated that I can't eat so that I can take my meds to feel better. Off to Urgent Care I go... The doctor was very concerned with amount of pain I was in & how I was able to hold it all together so well. She recommended that I see a GI Specialist. That I may need to have a Upper GI test done to see the actual cause of the pain & to rule out if I may have a hernia.
So go home & call the Clinic to see about being referred to a GI Specialist. Of course they don't have one on staff. Yet I'm referred to another Clinic that just opened up in the area that might be able to help me. Every time I have to call the normal Clinic my stress level goes through the roof!
I call the New Clinic to see if they can help me. As my luck would have it, they have someone that they can refer me to. But I need to see one of their doctors first. That's fine & they were able to give me a appointment the very next day!
The New Clinic was so helpful & understanding!!! They gave me all the information that I needed to call & make the appointment with the GI Specialist.I went home made the appointment.
I was able to get in the following week.