Well, Yes I have been a bad girl. Hopefully the long pre diagnosis post made up for the gap in postings. You see, we feeble humans tend to fixate on what is exciting or devastating and forget about the in betweens yet it is the in betweens that spice up our lives. So I will try to keep posting, I cannot say how often but as often as I am able, to let you know how I am doing and how the spices are treating me:)
Today I received my IVIG. These weekly treatments, along with the change in meds from Imuran to Cyclosporine have really helped my symptoms. The summer has been great! Alot of time with family, reconnecting with old friends that passed through town, and making wonderful new friends through the MG support group, the BiCuspid Valve Foundation, and my blog.
I can't tell you how much it means to me when I hear from readers. These posts and updates are for you. Whether you are newly diagnosed and want to hear what it is like for me and this disease or you are a friend or family member looking for more information. That is the whole reason I created this site...for you! And your feedback has been comforting, rewarding, and fulfilling. For those of you actually going through the illness, the reason I named this site me and MG is due to the fact that while we share a common bond our stories and paths are as different as our fingerprints. Yes we all have fingerprints but the intricacies are all different.
I am happy to report that my disease seems to be easing up quite a bit. With help from a very knowledgable and compassionate team of doctors and the support of family and friends I am starting to feel like Jen again! Yes, I still battle weakness and fatigue but I am learning how to live with this disease. I don't feel so lost and I definitely do not feel alone.
I am sad to see summer come to a close. The busy back to school season is upon us and Halloween stores are cropping up reminding us that the laid back life is coming to a close. The kids are excited to start their new school year and get back in touch with their friends they have missed over the summer. I can't say I will miss the 90 degree weather as that has wreaked havoc on my weakness. I am so happy to be able to open my windows and let the fresh crisp air in the house in the evenings. But I will miss our family gatherings by the pool and dread the thought of snow! Yikes, did I just use the "S" word? Anyway, like I said I will try my best to post more regularly and THANK YOU from the bottom of my heart.
I wish you all well,
Jen
YAY!! I'm SO glad you're feeling better! Yeah, I'm not lovin' the heat and humidity. The last week prior to these last few days was AWESOME!
ReplyDeleteI am glad you are feeling better. I always get nervous when you haven't posted in a while.
ReplyDeleteI know this is nearly a dead pot, since it is so old, but I recently found you and was cruising through time. Hopefully you have notification of comments and will catch this. Since you mentioned both hyperflexibility and aortic enlargement, I wondered if you had heard of EDS http://www.ncbi.nlm.nih.gov/books/NBK1279/ . It is a connective tissue disorder, and not generally life threatening, but may explain some of what you are experiencing in addition to the MG, which is awful in and of itself. I am not a Dr, so you should talk with a medical professional if this sounds familiar. Best of everything, Nan
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