strange

I saw Dr. Mind today.  I told him that at some point we'll all need to discuss return to work versus long term disability because I have benefits right now that are extremely good and if they feel I am not going to succeed for a long time we'll need to figure out the benefit versus cost.  He asked me where that came from.  I told him Dr. Brain had mentioned it in the hospital and that I know that I landed this way partially because working is very hard and stressful and that I don't know that I can return to doing it well or proficiently enough for long enough.  I don't think I can manage a more-than-8-hours per day job anymore and I don't think OT is ever going to be less than that for me (partially this is because we have such a shortage of OTs in Ohio making it really hard to have a job doing only 1 position, partly this is because it is nearly impossible for me to document while treating, and partly it is because with any job I have there will be a minimum of 45 minutes of commuting). There's also the issue where my blood sugar levels (more below) make me very nervous about the only 2 back-up meds I have.  And there is a point where my lithium levels are likely to be an ongoing issue that may require monitoring very frequently forever as the line between toxic and working is so thin for me and I do not feel bad when it is too high until I am hallucinating which is not ideal.  I believe that I've been told that being on lithium will require extensive monitoring long-term, especially now that my level is on the high side (even though I'm on the same dose I've been on for years).  And coming down with the level won't be an option for a very long time because lithium is the only drug that is known to improve suicidal thinking.  Anyway, there is a lot besides the simple fact that I have been so very sick for so long, sicker than I have been in all the years I've lived with this which is saying a lot, that says I may be better off on disability.  I know that.  I know how different I feel than I used to feel even at my sickest.  Admitting that is part of what required hospitalization, but after saying several times aloud that I think my career has ended at least for now it's easier.  And Dr. Brain's approach was to gently suggest that I should know that sometimes people come off of long-term disability as new meds change how they are doing.  I think this means she thinks it is time for me to do that.

So we talked about this a bit and I continued to talk about it with my new knowledge and understanding.  I think Dr. Mind and I have talked about this a little but very abstractly.  After he was sure I knew what I was saying and had thought about this he told me that he brought the idea up to Dr. Brain several months ago.  He said she didn't answer then but that he's been concerned about my trying to keep working after all the changes in my condition in the last year or so.  It seems he thinks I don't handle stress as well as I used to.  Which I don't.  It's hard to explain but I seem to be overwhelmed so easily.  He said something about we managed to save things 4 years ago when this came up for the first time in earnest rather than as an abstract time in the future.  I guess that's true since that was when Seroquel magically worked against the odds.  And perhaps I need to hang on to that, I worked 4.5 years longer than seemed likely.  And hopefully another med someday will change things.  I've had an amazing run that I should never have had thanks mainly to Drs. Brain, Mind, and Body (or Brind if you combine the first 2 as I did).  I may feel different later but for right now I know only that the plan is a long period of time off and that I have been through too much in the last year.  I think that knowing my history and belief system that if I have reached the point where I was seriously suicidal because it was so hard to face that work was too hard that perhaps working is not just too hard now.  I also would like to know that there are med alternatives that do not have a substantial risk of hurting my blood sugar before I try to do something as stressful as work.  Lithium and Seroquel have done most to all of what they can do to save me from myself.  Seroquel can go up some but not much and lithium is currently maxed out until my levels drop.  So I guess I've even made a decision that is very tentative as there is a small chance I'll get much, much better still, but the decision from now on has to be related to "can I do this without damaging my health or becoming suicidal?"

Blood sugar....I heard from Dr. Body.  He told me that he wants me to not worry about it, that it may be up due to stress and having been hospitalized and that it probably is still in a safety zone for now.  He wants to wait 2 months and then do some bloodwork but there isn't any need to rush or be afraid yet.  He knows how sick I've been and basically thinks I need to recover from that and then we'll deal with this if needed which he feels is unlikely.  I am so glad for that.  Hopefully in 2 months I can start losing weight and will feel better in general.  I am so grateful to him for telling me that there is not pressure yet because I really can't deal with this right now.  I really don't even care if he would have done more if I hadn't just been through so much because I truly can't imagine trying to handle this yet.

I smiled with Dr. Mind today.  I'm getting the impression I haven't done that in the last month or two.  It was something completely stupid; basically he skillfully backed me into a corner and I smiled instead of answering because it was skillfully done and I had no answer.  It's good to know that I still can smile.  It's also sad to   realize how little I've smiled in the last few months.  We also talked a good bit about what I am doing and not doing and how easily I get to be extremely tired.  Apparently that's normal and he's ok with what I'm doing which is a good bit of sleeping and limiting naps after 2 pm. So far my sleep patterns are gradually getting back in place and I'm getting consistent at falling asleep on my own and sleeping 8-10 hours.  That is acceptable which is good because when I am sleeping and not having nightmares I am sleeping hard.  It takes very little for me to overdo and I still worn out from going to the grocery the other day.  It took forever because I didn't think about a list and so I had to go to every aisle, some a few times as I tried to figure out everything I needed.  Then yesterday the only thing I really did was make a huge thing of soup but that took the energy I had left.

Anyway, I need to find some supper.  I see soup for meal #2 today in my future because nothing that I have frozen sounds very good.  Good thing I have a LOT of vegetable soup.