I've been posting less often than I've wanted to. Less often than I've promised to. I'm not going to beat myself up for it (even though I am internally). As usual there's a lot going on. Is this how it's always going be? I should know the answer to that question. Yes, it is.
I'm not just caring for myself as a physically ill individual, I also care for a physically ill son. I also have a mood disorder, and I use that in the broad sense implying the whole spectrum of moods that goes along with being physically ill: depression, anger, happiness, energy, etc. Therefore, mood disorder due to a medical condition. And, a son with a mood disorder, a true mood disorder, although he's doing so much better.
So, recently my new gynecologist wanted to try estrogen before going for the final solution (and I apologize for the use of that term if it is offensive to some but it seems appropriate in this sense). He gave me Lo Loestrin because "it's very lo estrogen with only 2 days off and you won't have those spikes of progesterone that cause your migraines or the side effects that you had on birth control pills before". I explained to him, I REALLY explained to him that I am VERY sensitive to medications and this was just not going to work out. He insisted. Okay, I would try it with an open mind. 5 days. That's what I was on it when the bruises on my legs showed up. My gums became swollen and started bleeding all the time, so much so that I couldn't eat or drink. I had blood clots in my nose. I had a bumpy rash on my face and flushing. I started a low grade fever. And, just a minor peeve compared to all these major concerns my hair looked awful! Mark commented "you'd think you had taken a blood thinner!" So I called the doctor's office and let them know I was stopping the med and starting Benadryl because the rash was a sign that usually started right before full anaphylaxis, but the other symptoms were concerning...and they are! They called back and said yes, to stop it, asked if the Benadryl had helped and "good" and to come back after I was completely better with a list of all the birth control pills I had tried before this one. He better not be thinking of putting me on another one!!! I will NOT allow myself to bleed out as if I HAD taken a blood thinner!!! I want the final solution, take it all out, hysterectomy please, I'm ready!!!
On another note, my son was in the hospital with a migraine. Even with my history of migraine, I've never been hospitalized, I've been to the ED many times, but never hospitalized! He had been home for a day on Tylenol and Zofran/Phenergan. The next day he still didn't feel better so I took him to the doctor for a refill on Fioricet and x-ray's of his neck to rule/out anything related to the EDS. We didn't get a chance to get the x-rays done because the tech was not there and I just wanted to get him home and treated. The next day, 3rd day, he still had the migraine so I just took him to the ED. They gave him fluids, Toradol for pain and Reglan for nausea by IV. The pain subsided a little, from a 9 to a 3, but he was still having photophobia and phonophobia with some pain. Since he can't use Depakote because of his mood disorder they decided to hospitalize him to do DHE treatment. DHE is usually done in a hospital setting because it can cause heart problems, intense nausea and other complications. I had DHE infusions at home and didn't tolerate it; it made me really nauseous and chest tightness. The neurologists explained that kids, generally, tolerate it better than adults. There was a point on the 2nd day after one of the doses where Ian just said "that helped!". I was so glad! He had been desperate in the ED, he had said "nothing is going to help, it's not going to stop". I knew that feeling so well. I've been there, pulling my hair and banging my head against the wall. My poor baby. We think this episode was triggered by dehydration and the smell of fish cooking. I sometimes get triggered by popcorn and spaghetti sauce. His Topamax has been increased to 2x a day and for now, as long as he has less than5 episodes a month he can continue on Fioricet. Also HYDRATION, HYDRATION, HYDRATION!!!
On a funny note, on the day he was about to get released Mark and I were on the phone and he says, sounding tired "I don't know why I just didn't sleep well". Ooohhh, I said "excuse me, YOU didn't sleep well?! Try sleeping on a pull out chair, in the freezing cold, getting up every hour because machines are beeping " IV occlusion" or the nurses are doing the IV checks, or "mom I need to go to the bathroom" which means unhooking him from the leads, pulse ox, the IV machine from the wall taking him to the bathroom then hooking him back up and doing this for 2 nights...And YOU didn't sleep well???" to which he answers "I love you". Funniest conversation ever! It's a good thing we can still laugh through it all :)
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