Still have not figure out what this illness is..

So, I was doing well for awhile until I went back to my endocrinologist who prescribed vit D and Metanx (a combination of methylfolate, b12, b6) and I broke out into a rash. The rash lasted for 3 days and now I am having stomach problems, restless leg, hypersensitivity, and numbness. I have had restless leg really bad for the past 2 days and now I am having this weird numbness/weakness feelings in my arms and legs. I was also having trouble swallowing/ spasms that were making it hard to breathe. I do not know what all of this is but I know it was caused by the allergy and it makes it all worse. I guess it will just have to run its course and I have to have hope that it all will heal again.

Of course this is after I start working and becoming a productive person again. I am now at the point where I realize that I may not be able to carry/have another child and I can't fathom that thought. There is nothing else I have wanted more in life than to be a mother and have a family. I would just really love to have one more kid. However, it is hard enough for me to take care of the one I do have and I dont want to be selfish. I really hope and pray to God that this all will heal and I can move on with my life. I want to be there for my family and live out my dreams. Life is sooo hard with a chronic illness. Dysautonomia is already debilitating and this stuff makes it worse.

Frustrated and upset

So I found out yesterday that Dick has to go on an underway for 3 weeks and I just started bawling. I know he cared but he did not show it much because he is stressed out himself. Last time he left for 2 weeks my world fell apart again by getting sick. I am not much better than I was then.

I still cannot eat much and have lost 20+lbs. I am awaiting on the results from the biopsies from my endoscopy which is probably eosinophilic esophagitis which is a shitty diagnosis. I am currently eating vegan brown rice patties which contain sunflower seeds, blueberries, bananas, raspberries, mangoes, potatoes, sweet potatoes, olive oil, olive hummus, brown rice products, and grassfed beef. I do not know if this elimination diet is working because I still feel like it is hard to swallow sometimes but I also currently have a a cold so who knows.

I am terrified of Dick leaving because of taking care of my 2 year old alone. I know I have my parents but it is frustrating that I am 30 and have trouble taking care of her myself. The other night I was making dinner and my heart started racing so fast that Dick had to finish it and give olivia  a bath. These are simple things most people do not think twice about but it is all I can think about with a chronic illness. I do not know why my dysautonomia is acting up again. It is probably because they used propofol during my endoscopy even though my endocrinologist said not to. The anesthesiologist felt that he knew best and wanted to use it anyway. I now feel palpitations and cannot stand up for very long. This means my heart rate is getting into the 150-180's because that is when I usually start to notice.

I dont want to be on a betablocker either because they have just as many side effects as they do help. I will just become sleepy all the time. Also, I am afraid to start new meds while dick will be gone because I dont want something to happen to me when I am alone with Olivia. I have a huge fear of this. Ugh I feel like my life has really been turned upside down these past 2 months and I wish it would go back to the way it was. I need to start painting again because it will help my sanity. I am finally finished with school and was about to start a new job and had to leave that. I miss going out to eat with my family and this was a huge part of my life. I miss working out and going to work out classes alone, that was a huge feat. I miss my life as a semi-normal 30 year old woman. I want to get back there again.

I have to have hope that things will get better otherwise I will just fall into depression. I have to have hope that someday I will be able to get pregnant, carry the child to term, and take care of both kids if/when Dick deploys. I have so many hopes and dreams that are being crushed by this chronic illness. I really hope one day to crush it and live out those hopes and dreams.

awaiting possible eoe diagnosis

Things have not gotten better since I last posted. I did alright around Thanksgiving but things seems to go downhill from there. During thanksgiving I was only eating gluten free fish sticks, split green pea soup, avocado, and popchips. I would also have blueberry and banana smoothies with coconut water. I managed ok. I started adding foods back into my diet and my swallowing has gotten worse. I now eat beef, coconut products, brown rice, some veggies, some fruit, sweet potatoes, and regular potatoes. I went to a hematologist to check for any mast cell issues but he doesnt think it is that unless my tryptase level is elevated which it is not. He also told me to cut out corn products and oats. So I had to stop the fish sticks along with other stuff. So far I have cut out chicken, turkey, pork, gluten products, barley, rye, oat, corn (its in everything!), eggs, soy, and dairy. It is so frustrating to feel like I can't eat anything. I went from eating whatever I want to eating barely anything. I have lost 20 something lbs in the last 2 months. I have quit working and I feel I am becoming obsessive over my symptoms. So I have cut out all those foods for 2 weeks now with no symptom improvement. I still feel like I have trouble swallowing about an hour after I eat. My IGE levels are still raised as well which is abnormal. I really wish things would just go back to normal. I really liked the way life was going before all of this. I just had an endoscopy done 2 days ago so hopefully I will get the results back in 2 weeks. I was incredibly nervous about the use of profofol but I seemed to survive ok. I really hope the diagnosis is not eoe and something treatable but I have a feeling it is going to be that.

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.