pregnancy not viable and still symptomatic.

The last couple of weeks have been really tough. I started spotting and bleeding and found out the pregnancy was not viable. They were worried it was ectopic so they did an ultrasound and luckily everything looked alright. I found out today that my beta is now negative (4) so I am relieved that my numbers are going down. It was very emotional for me dealing with the loss of this pregnancy but I guess what is meant to be will be.

My main symptom lately is having trouble swallowing which can make me feel short of breath. Night time is the worst and it leaves me in crying spells a lot. It is so difficult with dick being on duty every four days and me being home to care for olivia alone. I am so worried that something will happen to me and no one will know til the next day. I am holding my own today and going to see a hematologist. He will hopefully check for mast cell infiltration and whatever else. I also hope to get scoped soon when the doctor comes back from vacation. I am not looking forward to it but hopefully it will give me the answers/treatment I need.

Pregnant and having trouble eating.

So I found out last week that I am pregnant and boy was that a shock. The day before I was sitting in Dr. Sperling's office (gastroenterologist) discussing my symptoms. He recommended a scope for possible allergic esophagitis, mast cell infiltration, as well as some other stuff. Now, I can't have any procedures done because I am pregnant and I was really scared.

I have been having trouble eating lately and feeling like I can't breathe with a lot gas/belching and discomfort. I am upset because I can't take vitamins and I am scared that I am not giving the baby the nutrients it needs but I am trying my best.

I have spent the last couple of nights crying myself to sleep because dealing with a chronic illness is damn hard. I have an appt in a few weeks to go to an allergist and hematologist. They are going to research my mast cell issues and tell me if I have mastocytosis. After reading the symptoms and my endocrinologist always suspecting it, I probably do so I need to learn how to cope with it.

It has been really hard with my husband being gone on duty every 4 days. Somedays I wonder how I am going to take care of Livvy on my own but I am thankful for having parents that help me when they can. Last night was rough because I feel like I was experiencing an 'autonomic flare' I had heart pain, dizziness, and it felt like blood was pooling no matter which way i laid. I got really scared but woke up fine this morning. I am exhausted though so I hope I get better sleep tonight.

Allergic Esophagitis and frustrated

I went to the GI doctor today which was somewhat helpful but also made me emotional. I explained how I am still having a ton of stomach symptoms and how I have reacted poorly to chicken the last two times I tried it. He wants to scope me which I am terrified of but it seems at this point that I do not have a choice because he won't treat me otherwise. His ideas are that it is eosinophilic esophagitis, reflux, bile salt reflux, or possibly h. pylori. He is pretty sure it is EoE though and from what I researched, really limits what types of food i can eat. Right now I am only eating gluten free fish sticks, fish, pureed bananas, blueberries, peas, rice, and potatoes. I already feel so deprived and still symptomatic.

I never realized how much I loved food until I can't  have it. Thanksgiving was depressing as I was the only person deprived of turkey, stuffing, gravy, etc... I just want things to go back to normal before I had this reaction a month ago. I feel like this is a bad dream I can't wake up from. I really hope my kids will never have to go through this. It sucks being diagnosed with such rare illness with little treatment.

I don't know what to do about work either. I have such a great opportunity but I feel too much like shit everyday to go. My blood pressure is raised and my heart rate is really high. I just am losing hope. I don't know how to tell my supervisor that I don't think I can come back for months and I don't even know if she'd take me by then. I am just super duper bummed. I never pictured this is how my life would be at 30 but I do have a lot to be thankful for. I have an adorable little girl who makes my world go round along with a supportive husband, mom, and dad. I really don't know what I would do without them.

I just feel like an emotional wreck lately. I need to find the strength to get better.

Symptomatic night

Today went ok and I managed pretty well. I was thankful to have my mom come over and help me watch olivia as well as take me to the store to pick up my prescriptions. I am starting to feel extremely tired and having a little trouble breathing. I am hoping this passes as I know it is just a symptom of the dysautonomia but it is still unsettling. I am trying not to freak myself out because dick has duty tonight and it is just me, olivia, and the dog. I hope this passes.

Back to Blogging

I have decided to start blogging again because I need a place to express my thoughts. Also, I can tell my husband is getting low on patience of dealing with my illness and hearing about it.

Where to begin...

Three weeks ago, I was feeling fine and finishing school then I started to itch. I thought I had been bitten by a spider or the dog had fleas but this itch would eventually get worse. Two days later I realized I was having an allergic reaction to something and my dad came over to help me. My husband was deployed on the Bush (only for 2 weeks) and it was only me taking care of my almost 2 year old daughter. My dad saw the rash on my arms and gave me a steroid shot, prednisone, and Zantac. The itching seemed to subside but there were more symptoms to follow.

Here I am almost 3 weeks later weak, tired, and still sick. I feel like my dysautonomia has come back full force and I really thought I was over it. I have been eating very little for the past 4 days because my stomach is not working right. It is either really inflamed from from the steroids or something else is wrong. I am taking carafate, zantac, liquid antacids, and benedryl. Nothing seems to be really helping. A couple of days ago I had an extreme pain in the upper right quandrant of my stomach that spread to my right shoulder. You would think it was a gallbladder attack but I had my gallbladder removed 5 years ago. My dad gave me a GI cocktail and the pain seemed to subside about 2 hours later. I am still experiencing the shoulder pain off and on today but it is not nearly as bad.

I am dreading texting/calling my boss today asking her for time off because I do not know what she will say. I have already missed the past 2 weeks and I am not better. I just finished my masters and I should be excited about starting a new job but my illness is holding me back.

The worry has start to set in and I don't want to go down the road that I did 5 years ago. 5 years ago I got severely sick after coming home to visit my parents in VA from Spain (navy husband) which was eventually diagnosed as dysautonomia. Since then I slowly recovered and even had a baby girl named Olivia. I had a few setbacks but nothing that extreme. The last set back I had was in 2011 where i got hives after eating a chicken salad sandwich. They went away though and were nothing like I am experiencing now.

Now, I still get itchy at night and have this rash on my arms. My heart races when I stand up and i always feel like I have pressure in my chest. I get tired doing simple things and my blood pressure is all over the place. It mainly seems high but mostly the diastolic blood pressure. I am feeling weak, hungry, and in pain. My emotions are all over the place as well.

Ok, that is all that I can muster up right now but I will write later. I am not losing hope in fighting to get through this battle of the war of dysautonomia.