Ruined

I received a wonderful birthday present on April 20th. A letter from The Hartford informing me that as of the 17th, my meager benefits were terminated. I no longer have any income whatsoever.

The decision was fraught with errors, from what my job title had been to my diagnosis. They had mastoiditis, which is an inner ear infection. My doctor assures me that she has it clearly stated in her notes that I have systemic mastocytosis and am permanently disabled from any type of work.

Knowing not what to do, I contacted an attorney. They got me in right away, and we will be appealing the decision (which could take about 3 months) which will, in all likelihood, be denied. Then they will file suit. Which could take a year to be settled. A year!

I was shocked to find out how heavily the so-called justice system in this country is weighed now in favor of the insurance companies. You would be, too.

Meantime, I am too sick to work almost every single day of my life, so I cannot apply for unemployment insurance. All I can do is apply for Social Security disability, which I should have long ago. I have just been so sick most of the time that I just couldn't deal with it, but I have had days when I could have so I have no excuse. However, The Hartford had been pushing me to use an attorney they referred me to and I just did not feel right about it. It seemed like the wrong thing to do. They are a firm located in the same state as the insurance company, not my state. I was relieved, at least, to hear from several firms I had contacted, including the one I finally settled on, that that would have been the totally wrong thing to do.

Now, I have to file directly with SS myself and it will probably be denied at which time my attorney will step in. They also want to talk to me about the allergic reactions I had to the medications which sent me on this path to illness. I have an appointment Monday with that set of attorneys.

I'm trying to find out about medicaid, welfare, food stamps, food banks, whatever.

I expect to lose my house. Or have to file bankruptcy. Or both.

I am distraught beyond words.

I will lose my internet connection when the bill next becomes due. Afterwards, I will post only when I can from my mothers or sisters computer, I suppose.

I have found the clinical trial being conducted at U of Michigan by Dr. Cem Akins which is still recruiting patients for diagnosis and testing for mastocytosis and have emailed requesting information. My TMS support group leader is also working to find out information for me in regard to testing.

Has any of my readers ever participated in such a program? Will they pay transportation costs? If so, perhaps I can get a definite diagnosis. If not, who knows?

If you don't hear from me again, ever or in a long time, I hope this blog has been helpful to you and that you have found some information that was useful.

In Memoriam

To Life.

For now...

Ever since my accident, the treatment for which ended up causing my mastocytosis, I've had panic attacks. I had three, at least, the night of the accident, and I've had about a dozen since, in varying degrees.

About a dozen in almost two years does not qualify as often, so when they hit, I'm frightfully taken aback, which, I think, is an excellent way of putting it. I am hit with sudden, unaccountable fear of nothing in particular, everything in general. Sometimes it escalates from something relatively minor, with my response being outrageous.

I just had one so while the medication (Klonopin)takes effect, I thought I'd write a bit about it. Tonight, or rather this morning, since I've been so stuffed up I've stayed up all night trying to get clear enough to being able to consider actually breathing well enough to sleep, out it popped from nowhere. I finally went to bed and five minutes later was struck by panic that I had not paid my phone bill. Up I flew to dress, find my phone bill, reassure myself that I had not received a cut off notice, even to the extent of going out in the pre-dawn to search my car to be certain. My heart was racing, and I was gripped by unreasonable fear. So what? I would have just paid and it would be back on. But, no, I was panicked. Panicked not just because of my phone bill, but that disaster was about to befall me. Not the disaster of lack of phone, disaster!

This time I did not think, specifically, that I was about to die, as I do sometimes when I have one. But, still, it was lurking there somewhere in the dark recesses of the fruitcake of my mind. Tonight, it was just some vague feeling of utter, unavoidable disaster that would surely devastate me or devour me in some magical, inexplicable way.

I found my medication in a frenzy and took one immediately. A whole 1mg, not a half as when I am only feeling anxious, usually from the itching or the inability to do the things I want to be able to do. Then I checked my phone again to reassure myself (again) that it was still on, as though that would convince me that all was okay. Then, I was suddenly terribly afraid that the Klonopin would react with one of my other medicines, although I know for certain it would not, being prescribed all by my doctor and all being procured at the same pharmacist who would likely have pointed out any potential drug interactions and having read all of the accompanying literature of all the medicines. Still, I had to drag them all out and read them again to be sure, and would probably be reading them all once again had I not made myself sit down and start to write this post.

They are the most bizarre occurrences. My heart races, I begin flying or flittering about, my hands start to shake, my breathing becomes quick and shallow, I feel clammy all over, my thoughts race and I think unreasonable things when I know better.

I take the medicine, then proceed continuing the bizarreness for a while still yet, eventually I can sit down yet proceed to twist my hands and sometimes my whole body into knots for awhile while I worry, worry, worry, about something so ill defined in my head that I cannot really adequately explain it, even now and even here. Gradually, my heart calms and my breathing becomes deeper. My hands stay jittery for a while yet, as now, but will soon become less so. The clamminess will ease and I usually come to feel quite cold as I am becoming now. The tension in my back and legs begin to ease. I notice that I am no longer gripped in fear, it is just hovering, and will soon dissipate.

I will soon turn up the heat, crawl under the covers, my twisted body will ball up and I will sleep in peace for probably too long, and too late, but I will be peaceful.

Until next time.

When it will roar back for some unknown reason. Perhaps I know the reason for today. Perhaps it is the tragedy in Virginia that has brought this irrational fear and panic to me tonight. A reminder that sometimes fear does have a reason.

Baaaaack!

Sorry for the neglect to this blog lately.

Here is something I think is very interesting. For about 2 weeks after I finished the Z-pak of antibiotics, my mental dysfunction cleared considerably. Does anyone know why or why it would? I have no idea. I don't even know if it was connected, but it was definite and very noticeable.

During those two weeks or so, I also had almost no days of myalgia and the fatigue disappeared.

I don't guess it's possible to remain on anti-biotics all of the time, is it? I'll have to remember to tell my doctor and see if she understands why.

After 2 weeks, it began to decline again. About the same time, everything bloomed and my allergies went nuts and all of my symptoms began to come back or get worse with a vengence. Rashes flared up badly instead of remaining just visible and mildly aggravating went to wild, red whelping and insanity inspiring, stomach and digestive symptoms worsened, increasing exponentially it seems. Today has been very bad. I'm about ready to go with the astronaut diapers or something.

My neighbor from across the street was sweet enough to mow my grass for me one week ago today. I had the fan on the heat pump running at the time, but all the windows and doors closed. There were tons of garlic patches in the grass this year since I wasn't able to do much in the way of gardening or maintenance last year and I could really smell it in the house but I'm so duh all the time I didn't think, hey, maybe I should turn off the house fan. I got a little cough-y and a little extra congested but I was okay until he knocked on the door and I opened it. Within 2 seconds, my head filled with mucus, my throat closed up, and fluid started flooding in to my lungs. Bless his heart, I think I scared him. I had to grab a facemask, jump in my car and get the hell out of there and to my mom's house who lives only a few minutes away. Where I proceeded to scare the hell out of her while I wheezed and hacked and tried to get the mucus to stop flooding down my throat and get enough air in me to avoid turning blue. Benadryl and Nasalcrom (which is just sodium cromolyn) finally got me under control, but, as always, its extremely scary when I have a major, massive allergic reaction like that.

In the last couple of days, all the rashes flared up at the same time, I used the corticosteroid ointment in more places than I should at any one time and that always makes me feel especially punkish for a day or two.

The fatigue has not been especially bad lately, though. I do get tired more and faster than everyone else, but I get tired after actually doing things, not just for breathing. Don't get too excited. I don't mean I get tired after doing things like a normal person does things. I mean, I go to the grocery store and collapse in exhaustion. I sort the laundry and have to lay down for an hour. But, at least I don't wake up too tired to move.

My little dog is better and I'm counting my blessings that his illness was during this little space of time when I felt pretty decent or I never could have dealt with it.

I can't believe that I'll be 50 next Friday, April 20th. It's really hard to fathom. But, I'm glad. It's much better than the alternative, as they say!

Not really, and yet...

Summer makes me drowsy.
Autumn makes me sing.
Winter's pretty lousy,
But I hate Spring

- Dorothy Parker

Actually, I've always loved Spring. It is the season of my birth, and every year since it has seemed like the season of my own rebirth. Until, that is, I developed a disease where my immune system is on overdrive all of the time. And until Spring no longer springs but pounces like a lion with everything, and I do mean everything, blooming all at once!

I've never seen a Spring like this that I can recall. A few daffodils peeked out and seemingly the very next day, every tree, bush, bulb, and flower burst forth like a beautiful, yet deadly (to me) volcano of color and pollen.

We've had three 80 degree days already with another on the slate for tomorrow. Yet, it's likely to be freezing on Easter Sunday a few days from now.

Nothings happening to the climate, my ass. Way to go, (surprisingly) Supreme Court.

Meantime, as you can probably tell by both the quantity and quality of my posts, I'm living on double doses of Clariten and constant doses of Benadryl on top of everything I have to take already.

(crosspost)