For Better or Worse…That is the question

Hey Gabrielle,
I think I’m going through some of what you are going through as well. I think I am doing better, I feel (a little) better, some things have improved – and yet, I developed a new autoimmune disease and my neurologist does not think I am doing as well and wants to bump up treatment. So I don’t know the answer to your question but I am sort of feeling the same way.

As for the disability stuff, I learned the hard way that you can’t go in there and tell your neurologist about your best day because in the short period of time they see you in your long suffering with this disease they are only going to remember the positive things you tell them. Since I tend to forget all the negative things as soon as they happen I’ve gotten in the habit of keeping a loose journal of things like “was not able to grip on Thursday” or “stumbled all day long Friday, nearly fell twice.” A couple of months ago I put together that list and divided it into things that have improved, things that are the same, and things that are getting worse. I was surprised, as was he, that the list of “things getting worse” was much larger than the list of “things that are the same” which in turn was much larger than the list of “things that have improved.” I think that gave both of us some perspective on how well I’m doing. It was painful to actually list that stuff, I would prefer to ignore some of my more inconvenient symptoms, but it needs to be done. Writing it down also gives him something to refer to when filling out your paperwork. I try to make things easy on my doctor knowing he doesn’t have much time and has many patients. I don’t want him to have to think very hard so I give him lots of paperwork.

Finally, because of those kinds of “miscommunications” and my inability to get out of my brain fog for very long we finally contracted with a law firm to help with the disability stuff. It’s all very straight forward and it has already relieved me of much stress and confusion. They have already proven invaluable at tracking down some paperwork I’ve been requesting for months now.

I hope things get straightened out for you. I am going to be seeing the doc once a month for awhile so I will ask him his thoughts on the “better/yet not better” issue and let you know what he thinks – I already put it on my list. hee hee

Take care,

Julie

oops, double clicked on that little post button… sorry!

Hi Gabrielle

I think that it it is demoralising to have to “prove” all the time that we are “sick enough” to get IVIg, or Disability.

There is no question that it sure makes it tough to go to the doctor and say “hey – this feels better!” – you live in fear of losing something. You feel like you have to justify your IVIg each time…

From time to time it feels like the insurance guys are watching – “hey – look she gardened today; she must be better!” – it makes for a strange way to live.

The thing about the IVIg is that it has a short life, and you need a constant input of it to keep things at bay. As you said, when you don’t have it – you feel worse. As Julie said, you need to keep the list with you – then you can talk about the good and bad things – but more importantly, understand the trends over time.

Unfortunately, our systems recognise sickness, but don’t do so well on wellness.

Keep up your spirits, I hope that you are able to sort out your disability issues soon so it doesn’t affect your meds.

No, I don’t really worry about the doc saying I’m too well for IVIg, he has been trying to give me more for months now but my kidneys were really painful when I was getting 2g/kg. I think your return argument for “it’s not working we should stop IVIg” should be “no, let’s try more first and give it six months at a higher dose” or “no, lets try more often first, maybe I’m having too much down time”. However, the best argument you can have for your doctor is data – they LOVE data – and that’s where the list comes in handy. In fact, that’s where my list started… what’s better with IVIg, what is the same, what is worse – and the list is fluid as symptoms move from one column to another. By tracking my symptoms I was able to prove to my doctor that IVIg has a half-life of fifteen days in me, every single time I start going downhill after fifteen days, so when presented with four months data he readily agreed to increasing the timing to every three weeks instead of every four weeks. Now I don’t have much downtime at all. 😀

Yes, I do think it’s tedious that we have to justify to ourselves, our doctors, the government and sometimes even our families that we are really sick and deserve treatment or disability. But that’s the way life is, if so many people had not abused the system for so long it wouldn’t be like this. All we can do is try to provide enough information so that we aren’t presenting a skewed picture of ourselves and have a vast amount of patience when things don’t seem to be making much progress.

On a funny note, I was trying to cram in little symptoms notes on the average sized calendar we get as a courtesy from our local oil company (it’s cute, handmade too). Sometime last month my husband brought home a HUGE desk calendar and said “here, maybe now you can fit them ALL in.” I laughed too hard, but he was actually right – I do tend to write more now that I don’t have to strain my eyes to read what I’m writing and I’m starting to see more trends now and add more questions to my list to ask the doctor. Like… I’m better, I am more stable when walking/stumbling now but all of a sudden I’m getting foot drop again and I haven’t had that for six months now.

And I have to confess sometimes I just get so sick of my illness I just write down “same as the last seven hundred days” and go do something fun.

Take care and don’t despair, all will be OK.

Julie

Hi there

If you are suffering from dry eye (and possibly dry mouth?) you might have something called Sjogren’s Syndrome. Have you heard of it? My neuro keeps thinking that I have it since I have a positive AAN antibody, but no other symptoms. Apparently neuropathy is known to be a problem with Sjogren’s. It is an autoimmune condition where the mucuous membranes in your body are not able to keep moist. Hits women more than men. Just my two cents worth….

Debs