First Journal

Hello, 

Not sure where to start but this is my first time journaling here. I am a universoty student (about to graduate) and was diagnosed with hemochromatosis last summer. It has been a roller coaster to say the least. In the beginning I was very worried about what it would mean for my day to day life, and stressed about some of the symptoms I was having. How would I succeed in school/life with fatigue and appointments getting in the way? 

I was so, so tired leading up to the diagnosis (because of the high iron) and then even more so once I started getting phlebotomies every 2 weeks. Like fallasleepatwork tired. It's hard on the body to be draining a full unit so often! I was constatly drained and frustrated because I was working at a snails pace and my brain was foggy and I felt unmotivated because I only wanted to sleep all the time. But little by little my ferritin has decreased with the help of the phebotomies and I have been feeling the effects. I am more energized and starting to get back to my old self. It's a bit of an inconvenience having to get my blood drained every other week but it could definitely be worse. If I need to sit in a chair and be poked to avoid iron overload and organ damage/failure, well I can manage that. I feel blessed to have access to healthcare, to have friends who support me at some of my appointments and to have a disease that I can live with. I am blessed to be able to recieve support and answers on this site and I am blessed to be able to share my experience. 

I don't always have a super positive outlook though. When there have been random spikes in my ferritin or I've had a particularly exhausting phlebotomy or I've felt so drained I didn't want to get out of bed, I have felt defeated. I have felt like this is unfair, and frustrating and stupid and I wish I didn't have to deal with it as an added stressor in my life. But I always come back to the same conclusion: God wouldn't have given me this to carry if he didn't think I could manage it. So I move on from my bad days and I try to have less of them and I do my best to stay healthy and listen to my lovely nurses at the phlebs and treat it as no big deal.

I know that I have a manageable situation in terms of iron levels and phleb frequency. A lot of others on this site have had way higher levels, comorbidities and complications so I in no way intend to minimize their experiences with hemochromatosis. But I am proud to say that I am handling life with the disease right now. I am living a relatively normal life for a 20something woman despite the wrench that was thrown into my plans this year. I kind of cringe to think about the number of needles my arms will see over my lifetime, since I am pretty young it seems to have this diagnosis. But honestly what can I do about it? Take it day by day, one step at a time and trust that it's all part of the plan.

I didn't intend to write so much, but it felt good to get my thoughts out of my head and onto this screen actually. 

If anyone ever decides to read this all, I hope your day and your journey are blessed and I wish you sunshine and smiles :)

- ReverseVampire

(My friend's attempt at making me feel better consisted of saying "hey that's cool you're like a vampire except instead of getting blood you just get rid of it! Gotta laugh at yourself sometimes lol)