Anyone who has been affected by auto-immune diseases (whether personally or secondary) knows three things:
1. There is no known cause or cure - you will likely suffer for the rest of your life.
2. Every person's experience is different.
3. Most of these diseases are progressive; they usually get worse over time.
But the disease isn't the only thing that gets worse...
This past week I saw my Hematologist. There is a new medication, for those that suffer from the same blood disorder that I do, that has yielded some positive results. It is a prophylactic type of treatment and can, potentially, decrease the frequency and severity of my HAE episodes.
There are many risks to taking this medication - scary risks:
First of all, I need to mention that the top most reported side effect is NAUSEA. Yeah, not like I need any more of that damn nausea.
Second, it is not recommended for those who have a history of blood clots. Now, this is a bit complicated. I, myself, have not had any known instances of blood clots... but there is a family history of hemorrhagic mini-strokes. BUT, I am on at least one medication that can cause excessive bleeding and easy-bruising. So... do they cancel each other out? :S (My doctor has explained all of these risks and we decided together to try this medication on an episode-to-episode basis).
Third, I cannot take it with my bedtime medication. I often get loopy and dizzy at night, and 'sudden dizziness' can be a sign of a blood clot caused by this medication. That means I have to be prepared - and I don't want to be guessing WHY I feel dizzy.
I have to be on high alert for any signs of a blood clot in my limbs, a heart attack, a stroke, damaged blood flow to the eyes, plus the regular side effects (nausea, diarrhea, stomach upset, fatigue, sleepiness, laryngeal swelling, and signs of allergic reaction). I then have to separate the potential side effects from my regular daily symptoms that could be mistaken for signs of a blood clot of any kind (migraines, stomach pain, diarrhea, nausea, dizziness, fatigue, feeling sleepy, arm/abdomen/leg swelling, laryngeal swelling).
That sounds easy right?
What hit me tonight is that it is not just the disease that gets progressively worse. As the disease gets worse, so do the medications. The bigger the problem, the riskier the treatment.
The drugs get more intense.
The risks are higher.
The side effects are scarier.
And we are even MORE unsure as to what might work, so the guessing game gets harder.
Is it worth it?
So far, yes.
I am lucky enough to have several specialists and physicians, as well as some naturopathic doctors, who I trust, very literally, with my life. These diseases are so complicated and difficult to understand that no one in the medical field will make the right move every single time. They WILL make mistakes - we all do. But I trust that certain doctors will do everything in their power to help improve my quality of life. Plus, even if those doctors make mistakes, they are also the most qualified to fix those mistakes. Also, these medications, no matter how terrifying, are the only ways I have been able to somewhat decrease my pain and nausea - enough to function.
The more severe the disease, the more severe the treatment.
Gotta buck up, take a big breath, and hope for the best possible outcome -> or at least not the worst.