Well, it is the last day before my next treatment. I've actually been doing pretty good until today, where no matter what I do I just feel exhausted. Still, its better than feeling exhausted for a week, so progress is being made.
Lately I've found myself struggling with this illness/deficiency/what-have-you when it comes to various life situations. Let me explain, or wax eloquent, or - the more accurate label - whine about said situations.
The first of these is the trouble and bother and confusion inherent in trying to change my health insurance and move to a completely different city while making sure that I will still be able to get treatments. I am very lucky in that the University I will be studying/working for has excellent health care coverage, so as far as I can tell I don't have to be too concerned about the very large expense associated with IVIG treatments. However, trying to obtain any information at all is akin to pulling teeth. Nobody knows what I am talking about. Nobody knows the answers to any question that I have and instead attempt to look up the answer without being able to give me anything definitive to hang my hat on besides "your pre-existing condition will be covered by the health insurance." Great. I knew that because I did the research before I called, but thank you for confirming that for me. But when it comes to setting up the treatment, getting the necessary referrals, filling out the paperwork, etc. no one is positive what I should do. And it would appear that they won't know if there is a home health care company that they are associated with until I fill out paperwork stating that I need the treatment and inquiring if I can receive the treatment at home. THEN they will know if they have a home health care company they are associated with. Rant #1 done.
Second and less frustrating situation: How and when do I inform future roommates about my condition? Especially if I am able to set up a home care situation. I'm sure its not a huge deal, but I could understand someone having second thoughts about having big boxes of medical supplies and syringes delivered to the apartment and then having a stranger show up for a couple hours to stick needles and infuse liquid medicine into their roommate. Awkward. Not to mention where are we going to keep the IV pole? Ok, that actually isn't a big problem since it is a collapsible pole. But really, what young adult moving into their first apartment wants to tell people visiting "Hi! You can put your coats in the closet over there, the one with the keyboard case and IV pole on the floor." Totally normal. Although I suppose it could also function as a coat hanger on wheels...
And last but not least, the interaction of my condition with my night-time social life. Also known as its-a-weekend-night-I-want-to-go-out-with-my-friends. I'm not a huge party-er or drinker, but every few weeks or so I want to go out and have a good time with my friends. However, I notice that there is a slight drop in my health for a couple days after I go out (unless I'm the DD). Does that mean I should just be the DD for life? I'm finding it hard to find the right balance between being able to go out with my friends and have fun but also not have it affect my health for days afterwards. I find it even more frustrating that I have to think about it at all. In many ways I envy my friends their carefree nights out. I know I will eventually find the right balance, but the process, and the limitations, are frustrating.
