Extra Crud

A little over a week ago, at my little nephew's 4th birthday party, I unthinkingly sat across from one of my dearly loved nieces who had bronchitis. As I've mentioned before, I've had over half a dozen intensive rounds of Prednisone which weakens the immune system, so later, my mom pointed out that that had probably been a very bad idea for me and that she had tried to get me to sit somewhere else. Me, being a virtual mental incompetent with this disease, did not get the hint.

So, once I got to my mom's place, I thought it would be a great idea to gargle with Listerine, which I hadn't used in years. (I do occasionally use Scope.)

Badder idea.

I quickly swished a bit in my mouth and spit it out, and took a bit more in my mouth. In those 2 seconds, maybe, it was enough to cause my throat to slam shut and my head and chest to be filled with mucus. I had to spew it out of my mouth and ran to my purse, unable to speak or breathe, gesturing wildly to mom.

I was able to get some of my Albuterol inhaler in me enough to open my throat enough to swallow a couple of Benadryl between severe bouts of coughing. Eventually, I was able to get down a hydroxyzine (H1 inhibitor), a couple of ranitidine (H2 inhibitor), and a Phenavent (a molecular equivalent of epinephrine and ephedrine).

I had no Epi-pen as I haven't yet been able to swing the $90 bucks for it, having no insurance.

After gagging and coughing and gasping and near vomiting for about 10 minutes, I coughed up/vomited up an entire handful of mucus.

AN ENTIRE HANDFUL!! I swear, it was about 3/4 of a cup! It was the most revolting experience in my life, that I can recall.

I don't know if this was anaphalaxis or not, but I seriously thought I was going to die for about 10 or 15 minutes.

Gradually, my system calmed down, but for several days I was a good bit sicker than usual, especially wracked by the physical pain and exhaustion.

Now, I am apparently suffering from a cold on top of the general misery I live with daily. About two days ago, my head became stopped up non-stop, despite my usual use of the nasal spray which is the only remedy that allows me to breathe between blowing my nose, which is a constant. My doctor says to just keep using it since it's the only thing that helps. I mean, when you're shoveling in antihistamines like Allegra, and hydroxyzine, (and whatever else is available sometimes) and your nose still won't quit running and you still can't inhale through your nose, you do whatever works.

So, last night I started back on the Phenavent regularly which I've been hoarding for use during my worst times. It's helping with the congestion which is now filling my chest, also. The sneezing, coughing, watery eyes, and back and chest pain I'm just living through. The usual myalgia is kicking up a little more strangely than usual. The Relafen is helping, then not, then is. What the hell.

It's a little hard to tell where the virus picks up and the masto leaves off.

Medication

Two of the best medications for mastocytosis are on the Wal-mart $4 list. Doxepin and Hydroxyzine. Here is the link. I haven't been on Doxepin yet, but I plan to get an RX from the doctor if she will, because I've only just learned that it is a good medication for mastocytosis because of its inhibition action of H1 and H2 blockers. Hydroxyzine keeps me sane from suppressing the itching and the anxiety that it causes. I have to find out it Wal-mart has only the syrup or what. It's not clear on the list.

As for Wellbutrin, the best price I've found is here. The dopamine reuptake inhibition of Doxepin is minimal, so I will still need the Wellbutrin for that, probably. The doctor had wanted me to add Zoloft because it won't cause me to gain weight. Doxepin might. So I'm not sure what she'll say.

Since I also have ADHD, I take Ritalin, but an affordable alternative is dextroamphetimine (Dexedrine), so I'm hoping to maybe take that which should counteract the weight gain, maybe.

It's ridiculous having to do all this research myself, but my doctor is no expert on mastocytosis. Of course, all masto patients experience this since there are only a handful of experts spread around the world and even they are treading on unknown territory most of the time. OK, actually, I'm just procrastinating, which is easy to do when you feel like shit anyway.

I still have to do the paperwork for PPA. I think I just wanted to do some research first so I know if I'll be better off switching or staying with whatever I can get on the PPA program.

Singulair is my main concern. I have found no affordable sources nor any alternatives whatsoever. As you can see here, the patent is extended until 2012! Merck gets 20 years of patent protection on this medication. 20 years! However, I do think they participate in PPA, so I'll update on this.