Wednesday, July 30, 2008

Pushed To The Limit

We got more test results back today from Terri's doctor. Yet again, no answers. Now he isn't sure how big a role Lyme is playing, because she isn't responding to the antibiotics any longer and is in fact feeling much worse. He's not sure why this is. He thinks perhaps it's a case of Babesia infection (which did not show up on the test, which he says misses it in 70% of cases but which we paid almost $300 for upon his recommendation anyway...) so we are going to try Mepron, an anti-malarial drug. Hopefully insurance will cover it because it's quite expensive. He also still thinks there could be some virus at play. But we don't know what.

Stopping all antibiotics for now, upping some other supplements, trying the Mepron... her tests show a high level of inflammation in her body (but we don't know why). She feels awful all the time. I just don't know what to do or how to help. I am usually able to get past the disappointment of still having so answers and no improvements and look to the future but today I am just not in any shape to get over the hump immediately.

Terri feels terribly discouraged. I'm not sure if what I'm feeling is discouragement or if I just feel really helpless and angry at the unfairness of it and frustrated by the lack of answers. I am feeling incredibly sad about the whole thing and just sick about it. I know this is what thousands of people go through every day, for much longer periods than we have, but right now this all just feels like a terrible joke. I don't understand it.

Terri got her (first) refusal for SSDI yesterday so there's some added pressure and complication. We'll get a stupid lawyer or whatever stupid thing we have to do to jump through the stupid hoops.

We were really hoping that we would have some answers today, to SOMEthing. One things the tests showed was that she has this genotype that makes it harder to recover from things, and makers her more susceptible to all kinds of infections. The doctor said this did not make him lose hope for her recovery, but it does make it trickier. What is so maddening is how long everything takes. She has to try this supplement cycle for a week, and then add the Mepron. And then see how it goes. If that doesn't work, then... what? Another cycle of weeks, turning into months, of trying to figure out what is going on. I can't stand it.

But we do, we stand it and we keep trudging along. It feels unbearable right now. This shitty thing is eating up everything in its path and I hate it, hate it, hate it, whatever it is. I'm actually furious at whatever these bugs are that are robbing Terri of time and resources and all the opportunities she has/had. It's just making me cry today and I feel so helpless.

I know there's always light somewhere but right now we are in the dark.


stefanie said...

Oh Daphne, I want to give you a big hug right now. I understand how wearing it all gets. All the tests all the waiting, thinking maybe this is the cause and it turns out not to be and you are sent back to the beginning to start over but not quite start over and it seems an endless loop that will never end. It is a test of strength and endurance. You and Terri will get through it if for no other reason than that you have each other.

Daphne said...

Thank you! I know you do understand! I think of you guys often, and am so glad things are stable? this definitely feels like a test. So far we are winning... not giving up... but it such a rough passage!

stefanie said...

Things are stable here for which we are very glad. There has been a lot of fatigue this summer but it has been manageable.

It's good you are able to stay positive. You will get through it. All the best to you both!

Daphne said...

Fatigue can be so difficult. I'll keeping thinking about you two, as well.