For better or for worse

Okay, so here's the deal...for the last 8 years (maybe even longer) I've been experiencing pain in my body. After I had Landen I started having bad hip and leg pain. I went to the doctor and she told me that given my symptoms she thought that I had Fibromyalgia. The pain went on. Every time I got sick, I had pain everywhere. At age 26 I was diagnosed with shingles. After having Kayla things shifted a little. The doctor told me I had a vitamin D deficiency as well. I had mirena placed because it was the only type of birth control I can have since I have Factor V Leiden Thrombophila (a blood clotting disorder). I then bled for the next 9 months until one day it magically stopped. Then the dizzy spells started. I would get so dizzy that I would pass out and fall where ever I was. After moving to Florence, SC, things seemed to have gotten worse. I started passing out more often and I noticed a change in how often I was getting sick. After we moved to Summerville, SC things didn't seem to get any better. I even got the shingles a second time at the age of 30.

Given the fact that my dizziness started when I had the mirena placed, we thought it logical enough that maybe that was the culprit, but since we were going to have it taken out we needed to make some final plans about our family.We decided to go ahead and try for one more baby. We got pregnant right away but I ended up miscarrying. We got pregnant again right away and man this one was a doosey. Out of 4 babies, this one was the WORST morning sickness ever. I was literally bedridden for the entire first 12 weeks. My OB couldn't explain it. The dizziness was insane. I couldn't think straight, I had tinnitus in my ears. Headaches. I had trouble focusing. So first I went to an ENT (thought maybe my balance was off or maybe this was an ear problem). I noticed when I ate dairy the symptoms would worsen, so I went off of all dairy (this seemed to help a lot but wasn't a fix all).The ENT sent me to Neurology(she said I was having migraines). I started having heart arrhythmia, so they sent me to Cardiology. Cardiology had me wear a heart monitor for 30 days, which did show that I was having an arrhythmia, but couldn't show anything else. I was to check back with him 4 months after I gave birth. I was pretty much out of options, because I refused to have the MRI done while I was pregnant. I just felt like no one was taking me seriously or even listening. They treated me like I was crazy. THEN late during my second trimester and on into my third, I felt great. I could eat dairy again. I still had some pain but I had lived with it for so long that it became second nature. 

The day we came home from the hospital I got sick. Sinus infection. A bad one. Not something a new mommy ever wants to have the day they come home from the hospital, I was down for a good little bit for that infection. It seems like I've been sick ever since. Soon after having Aidan I started noticing that I was losing a little more hair than usual (which is typically normal after pregnancy). I started feeling more tired than I had. I seemed to lose my baby weight pretty fast. I started feeling a little weaker. Then about 3 months postpartum the hair loss started becoming more significant. Mark started commenting about the amounts I was losing in the shower alone. 

This is after just 1 shower and a clean brush after wards. Crazy right?

Then the dizziness started again. Passing out. The headaches, OH MY GOD the headaches. The head fog (the point where I couldn't think straight, couldn't focus- this drags me down more than anything). I started experiencing new symptoms like, purple toes, a heaviness/pressure in my chest, difficulty catching my breath while walking or doing normal daily routines, pain in my ankles and toes, a rash on my face after only being on the sun for about 20 minutes, Then the hair loss got even worse. I started collecting it for my doctors appointments. I figured that if anything he can see how much I'm losing. It was pretty significant. 

I started doing more research and started looking into Autoimmune Diseases. Then I had an epiphany, I saw other symptoms that I never thought to put with other symptoms. So I started a list...

• Spells of Passing Out
• Trouble Remembering Things

• Dry Eyes
• Rapid Eye Movement when focusing and when eyes are closed
• Pain behind eyes
• Trouble Focusing
• Dizziness
• Foggy Head- Can’t think straight or focus
• Migraine Headaches that last for days
• Restless Legs
• Extreme Fatigue
• Severe Hair Loss
• Pressure/Heaviness in Chest
• Nausea
• Low Appetite
• Dairy Sensitivity- makes dizziness and fog worse
• Joint  Pain
• Muscle pain in legs
• Anxiety
• Ulcers in mouth- all the time
• Intolerance to Caffeine- makes face numb, heart arrhythmia, dizzy
• Heart Arrhythmia
• Light Sensitivity
• Dry Mouth
• Tire Very Easily- I have to stop frequently when walking, I have to stop ½ way up the stairs, I get tired chewing food, can’t hold my arm up for very long
• History of Ovarian Cysts
• Hard time breathing- can’t catch breath
• Trouble remembering simple things
• Achy pain everywhere
• Sensitivity to cold
• Weak
• Joint Pain
• Allergies
• Rash on face when in the sun
• Purple Toes

This was my original list (I'm still adding new symptoms to the list as the days go on). I did research on a good primary care physician and found one with Roper that dabbled in chronic diseases. So I thought, "Hey, maybe he's the one". It turns out I think he is. He sat with me for almost 45 minutes going over the most severe symptoms, talking about autoimmune issues. He made me feel human and not crazy. He also made me reconsider every medical issue I've ever had in the past too. I don't think I have Fibromyalgia. I don't think I ever did. I believe I was misdiagnosed. EVERYTHING and I mean EVERYTHING points towards autoimmune. His suspicion is that it is Lupus. Most of my symptoms point towards that. He sent me over to the express care across the parking lot to get some blood drawn. He ordered 7 different tests, and said that it would take about 2 weeks to get the results back and to see him then.

Three days later I woke up and I couldn't bend my left arm without excruciating pain. This went on most of the day. I steam cleaned the living room and got the dishes done anyways. Friday morning I woke up a little congested with a sore throat. As the day went on I started feeling weaker, and more painful. Then it really hit me. It took me about 20 minutes to get up the stairs with Aidan so I could run a bath for myself. It didn't help. Ibuprofen didn't help. Nothing helped.

This audio clip was from Friday March 25th

It got to the point where I had to have Mark escort me to the bathroom. I cried all the way there. He had to carry me back to the bed. The pain got to be so bad that I cried through the whole night. I couldn't roll over by myself. I couldn't scratch an itch. I couldn't go to the bathroom by myself, I couldn't even take my medicine by myself. I was virtually helpless. Mark really was my savior. I put that man through so much , but he never ever lets me down. EVER. Yesterday, I couldn't hardly move. As the day went on it got a little better. I had Mark draw me an epsom salt bath and that helped a lot. Today I'm walking. Very slowly, nevertheless. I did go to the doctor though. My throat was hurting so bad. I waited 2 hours to see her. It was just 2 ulcers in the back of my throat caused by whatever is wrong with me, autoimmune wise. She did tell us however, my ANA autoimmune test did come back positive. So now we just need to figure out which one I have. I plan on calling my family physician in the morning and seeing if I can get in this week. The weight loss is continuing. I weighed 124lbs before I got pregnant. I weighed 154lbs at my last OB appointment which was 5 days before my water broke. I weighed 122.7lbs on Monday and today I weighed 120lbs. Lost 2.7lbs since Monday. I realize I just had a baby 4 months ago, but I JUST HAD A BABY 4 MONTHS AGO. Something that usually takes me 10 months to come back from only took me 3 months. That was not a healthy weight loss at all, and I'm continuing to lose it. 

This is part of the collection of hair I've lost. I'm not sure at which point I just give up and get rid of all of my hair so it can all grow in together. My hair is really pathetic right now. 

I've become uncomfortable with my hair. You can visibly see the hair loss. So you'll probably notice me wearing hats of some kind until further notice. 

I've felt down lately, because I can't do the things I love to do right now. I want to be able to go play with the kids at the park, or sit outside with them. I want to get in the floor and play. At this point though, those are really hard things for me to do. It sucks. I'm pushing myself to say "it'll get better Mel, you know it will", "stay strong for those kids". Sometimes it really does work and sometimes I just need to fall and that's okay. I'm okay with that sometimes, but if you continuously see me falling, please help me back up. 

xoxo

Mel