Wednesday, November 25, 2015

Do You Feel Alone In Your Journey?

Do you ever just feel alone? You could have all the people in your corner, and you're still lonely. I think after a person has been chronically sick for such a long time, people just don't know how to help you anymore. Friends and family and anyone else supporting you don't understand. People will never fully understand what you are going through, unless they are going through the same thing.

I've been sick for so damn long, I'm drained, physically and mentally. I hit remission for two years, and that was so nice. A really nice break to feel so good for that period of time. It gave us a chance to have our second daughter, she was so worth waiting for, and all the pain and suffering I went though to get better. My children keep me going, I push through the days and nights that I'd rather not. It would be easy to surrender and just lay in bed and not care about what's happening around me. But that wouldn't be fair to them, and I would miss so many fantastic memories with them and my husband. But man, some days, some days are just so hard. My health is declining and I feel like it's declining more rapidly these days. I'm still able to work my job and function as a parent, but it's not easy, that's for sure. On the weekends, I'm so exhausted I just want to lounge around and veg to catch a bit of a break. Thankfully my husband is awesome and let's me sleep in, and if I nap, I'm out cold for a minimum of 4 hours. My body just needs it! 

I do feel like people have given up on me, I mean in the world of the chronically ill, why would they stick around? What are they suppose to say or do for you after all that time? It's the same story, ya know?! My answer is- just be there. Keep communicating, just talk about your day, ask about ours, anything really. Just be there for them, because they need it. The longer the chronic health problems go on the more support a person needs. I think it's hard for the outside world to see, we get good at covering the pain and anything else that's going on, because we have to. It's our world, and the pain that was an 8 on the pain scale five years ago, is probably now a 4 because we adjust. If you're reading this and you have someone in your life that's chronically ill, keep checking in with them. If you're reading this and you are the chronically ill person, know that I completely get it and we can lean on each other to get through. It's hard, really hard, but the world still has a lot of beauty in it, and beautiful people on it. We just have to look a little harder some days

Monday, August 3, 2015

Relapse and New Diagnoses

I am very long over due for an update on here. I gave birth to our second daughter in February of 2014. It was a rough pregnancy to say the least but I made it through and gave birth to a perfectly healthy, sweet, spunky little girl! I was on a two antibiotic combo while pregnant to help prevent passing along lyme disease to her. Even though I was in remission, it is still recommended you be on the two drug combo to protect the baby. We tested the cord blood and that came back negative. I am keeping a close eye on her but other than two food allergies, she is a healthy girl and we couldn't be happier with our two girls. They are the loves of our life and we couldn't ask for better children! Parenthood is an amazing journey, right?! We are so blessed! 

Onto my health. I am not doing so well, recently I've been diagnosed with Mast Cell Activation Disorder or Syndrome. Also known as MCAD or MCAS. Over the past year I have been having a lot of trouble with food allergies and sensitivities. I have has a few anaphylactic reactions, Iv'e had to use my epi pen twice and should have used it three times. Have been to the ER many times and just trying to figure out what the heck is going on with me. I was lucky enough to see a Doc in the Mast Cell field that is the top dog, many people travel really long distances to see him and lucky for me I didn't have to go far. I had to go through testing twice because its VERY sensitive and the first batch was mishandled so round two was the winner (or looser? lol). It proved I do in deed have Mast Cell and we can move forward with treatment. Its tricky and very confusing. There's only so much researching I can do before I get completely overwhelmed and have to take a break. So I still have a ton to learn. According to the specialist and the Mast Cell community, it can take years to find the correct drug combo that is the winner for me. Oh joy, sound familiar? It's all so confusing. This particular Mast Cell doc doesn't believe in chronic lyme and thinks the crappy testing out there is accurate (insert eye roll), so it gets really confusing what is Mast Cell and what is my lyme and co-infections. I really do not understand at all why these medical professionals don't believe you can have both. Of course you can, ticks and lyme are everywhere, its an epidemic so of course you can have many different health things going on at once in one person. And I am sure they feed off of each other and break the body down even more. I have so-much-learning-to-do. Its exhausting! I was also recently tested for the MTHFR gene and it looks like I have that too. Not surprising but still annoying to add more to the plate. Still learning what that's all about too and need to see the genetic team for more specific testing. Apparently I can be at risk for blood clots now? As far as the lyme, I think I relapsed a few months ago. I didn't want to admit it and also didn't want to pay an arm and a leg to see my medical team and for treatment. There is no denying it now though, I am getting worse and need to do something about it. Just in the last week or two the bone pain has gotten so much worse. Joint pain has been mostly feet consistently and lower back but now its traveling. Knees have been so dang painful recently along with feet. I am sure both babesia and bartonella are back from my current symptoms I am showing along with the lyme. I feel like an old lady. It especially kicks in full force at night after I have been sitting for a bit, its hard to get up and oh so painful. The joys, right?! So, I decided to make an appointment with my naturalist in a couple weeks and go from there. May be adding in my LLMD in NY too. 

My older daughter who is 8 is having a lot of health problems lately too, so we are trying to figure out what is going on and how to help her. There is a local peds Mast Cell doc that she will see for testing, most likely test her for lyme again and have some specific genetic testing done for her too. Poor thing is too young to deal with so much. She already has celiac disease and a metabolic disorder called MCADD. Lets hope we can get all of under control for her specifically.