A week into the new year and I’m doing ok.
Methotrexate hit much harder than usual this past weekend. Much more nausea and the sensation that my limbs are full of lead. Basically spent the weekend in bed, which is what usually happens.
Today I drank more water and actually took a 10 minute walk. I sat outside for awhile and watched Sunshine play with her friends. She is growing up so fast. Halfway through kindergarten.
Migraines– I voluntarily stopped some of my meds due to cost. One of them was to help with my migraines (topamax). I have been on that medication and Lyrica since 2007. About two weeks now without them and I think I need to go back on the topamax. I have had a migraine 4 out of the last 7 days. But when I refilled the prescription, I found out the hard way that it wasn’t on the list of “approved generics” at the local store. So instead of paying $5, like I thought I would, it came out to $220. And now I don’t have it. I know not to even try Lyrica. Last time I tried paying cash it was something like $8 per pill.
So I am now going to start looking at those pharmaceutical prescription help sites. Its clear that I do have a need to be on some of these meds.
I am also getting help from a family friend to organize my medical records. She is a legal nurse and has volunteered to help me with disability, finding free meds, etc. It is pretty clear right now that I cannot return to my former employment. I’m looking at other ways to make myself marketable, but one of the big issues with me is the fog that the meds cause. And its unpredictable. Nurses need to be on task, be able to make judgement calls. And sometimes I can’t. Sometimes I’m functioning just fine, but if I get to overwhelmed or too tired, I just can’t think. Even looking at job descriptions the other day completely threw me through a loop. I just couldn’t concentrate.
So getting help in this maze of health issues is so wonderful. And even though I am a nurse and the product of two nurses, I still don’t know what I’m doing in terms of applying for benefits and presenting a medical case to the government.
I have also found a website that is completely dedicated to the actual problem I have. I still don’t have a definitive diagnosis of sarcoid. But at the last eye appointment, the doc mentioned the words “pars planitis” in addition to the usual terms of “uveitis”. So I plugged them into the old search engine and I find a website specifically for pars planitis (www.parsplanitis.org).
Its rare. I found it through the “rare diseases” database. So rare the the group on Facebook for this condition only has 38 members.
Finding the website made me feel so much better. I even wrote to the expert doc on the site and he wrote back. Although the information wasn’t hopeful at all, it was a step in the right direction. That doc says that I should do anything I can to get health insurance and that my case sounds very aggressive and that I am running the risk of permanent vision loss. Fantastic.
But it did help to read the tons of information. It helped to understand the condition better. I have been addressing this in the wrong manner. I have been looking for systemic reasons for why this is happening. Per the info I have, it can be idiopathic. So I am switching my thinking around to focus on just my eyes.
It was also helpful to read that my docs aren’t completely off their rocker in prescribing treatment. What I am doing is inline with what this website says is the proper treatment. Again, as nurse, I don’t 100% believe in everything the docs say. Even with my eye doc, who is fantastic, I still have the tendency to be less trusting because of my 10 years of working with doctors.
So this year is going ok so far. I still take it one day at a time, one night at a time. That’s all I can do.