I am back

And thinking about things. I suppose I should write a brief history of myself. Here it is - very very briefly because I'm tired and need bed.

So I'm soon to be 31. When I was 25, months shy of graduating from nursing school, I was diagnosed with multiple sclerosis (MS, in case you didn't know). My symptoms were numbness and tingling in my legs and feet, and I had this thing called Lhermitte's phenomenon, which is an electric sensation down the spine when the head is tilted forward. I knew something wasn't right. I also had some significant fatigue (but I was working full time and going to school! of course I was tired!) and depression. My mom looked up my symptoms on WebMD and said "maybe you have MS." I went to my primary doctor who sent me for a brain MRI. Bad news bears. I then had a c- and t-spine MRI, a lumbar puncture, and evoked potentials. Everything was normal except for my MRIs. I had MS lesions in my spine and my brain. I totally thought I was going to die.

Luckily I worked at a major university medical center, so was able to get an appointment with a great neurologist. She started me on Rebif. I had the choice between Rebif (subcutaneous three times a week) vs Avonex (intramuscular once a week). The huge needle of Avonex scared me away. I stayed on Rebif for 4 years when I just couldn't take it anymore. The injection site reactions were terrible. I had red bruisy blotches on my butt and thighs. As a single girl - who wants that shit? Plus, the injections hurt like hell. So I switched to Avonex. It was going okay for a while - I was self-injecting - until the night when I had a minor panic attack while injecting. So now I'm a nurse and I know lots of nurses... so I had friends give me my shots. The problem was that I wasn't getting my shots at bedtime anymore, so I was feeling a lot more of the side effects. Flu-like symptoms... ugh. Imagine getting the flu once a week. It sucks. So I've skipped injections twice in the past 3 weeks. Probably not good.

It's hard to continue with the injections when I'm not directly seeing any benefit. Yes, my MRIs have been stable (no new lesions, no enhancement, etc). Yes, I haven't developed any further symptoms of MS. So - it's hard to stick with a medication that I really can't see the benefit of directly. Who knows - if I hadn't been diagnosed back in 2003, would I have gotten sick? Has the medicine prevented the progression of my MS? No one can answer that question, which really is terrible. My neurologist says I can stop the drugs when I decide to get pregnant. Ugh - who knows when that will be? So I've HAD IT with this shit. The MRIs, everything.

I'm seeing my neurologist on Friday. We'll see what she has to say. A nutritionist friend of mine said it probably wouldn't be a good idea to stop the meds... which was kind of my plan. Stop the meds and go with holistic therapy. She suggested doing the holistic stuff on top of the meds. Great - more stuff to think about, more stuff to remind me of this chronic disease.

I'm very interested in integrative medicine, both personally and professionally, and my nutritionist friend told me about functional medicine. It's similar to integrative in that it looks at the whole person, not the symptoms. Functional medicine tries to get to the root cause of illness and go from there. A lot of autoimmune diseases are potentially linked back to the GI system. I think I will ask for the blood test for celiac disease, since I've always had GI issues. Not saying I have celiac disease, but it's an easy test to do. My friend suggested I keep a food diary, but add in "bowel habits" and symptoms experienced after eating. It will be hard (I'm always good at those for a day or two, and then I forget). But at least it's a start. Maybe I will see a functional medicine MD (who will probably put me on an elimination diet, etc). But not until this semester is over.

So much stress this semester - this is not helping my mood and outlook at all! So - when things calm down in the next few weeks, we will see what happens.

the first

Two and half glasses of wine. Welcome.