Blog#17--The Downward Spiral

So yep, I'm borrowing the album title "The Downward Spiral" from Nine Inch Nails. Kinda ironic because I used to love that album but now I don't listen to Trent Reznor anymore since he has bashed the Smashing Pumpkins every chance he gets.

I'm warning you up front that this is *not* a happy blog. I'm mad, angry, hurt, ashamed, and scared. I will try to explain.

As in my previous blog, I mentioned about my vaginal bleeding. Well it has done nothing but continue to get worse. Last Thursday night I spent about 7 hours in the local ER because it had turned into hemorrhaging and it was so profuse that it was scary.

In the past few weeks I've had 2 exams by OB/GYNs, xrays of my lower pelvic area, internal and external ultrasounds on my uterine lining/ovaries, had blood work done and nothing was found to be the cause of it. The doctors have gone back and forth over and over again putting me on additional hormone therapy, taking me off of it, and putting me on it again so my body is terribly confused.

I think I've already mentioned before that I am almost always on the verge of anemia and don't have enough blood in my system. From all I've read & heard, the endometrial (sp?) lining continues to absorb more blood from your body if it doesn't get enough of the right hormones. I was kinda shocked to hear that, as I just thought I was shedding 3 months of menstrual blood but I'm not. . it's always fresh blood and my closest way of describing it is that the endometrial lining is like a sponge and unless told otherwise, it will continue to absorb blood from your body and whenever gravity takes effect, it bleeds out and starts the process all over again. To me, this says that I'm losing blood and rather rapidly but the doctors refuse to even consider that I may be starting menopause. It's not secret that FM patients and those with Polycystic Ovary Syndrome (PCOS) go into menopause earlier than most and my sister started having trouble around my same age.

Today I went back to the first OB/GYN I dealt with and she told me that the best way to determine what hormone your body needs (it's not always estrogen, sometimes you need progesterone, too) is to look at the endometrial lining via the ultrasound. I may have this next part backwards but you get the point: if the lining is too thick you need more estrogen and if it's too thin you need progesterone (I may have that backwards). . but when I left her office I was told that she'd know exactly what to do when she read the ultrasound report and saw the pictures.

About 2 hours later, she called and said my lining was neither thick nor thin, just 'average'. In other words, she doesn't know which hormone I need and she insists that blood work to test these levels would be off due to all the hormone therapy that's gone on over the past few weeks (and I grudgingly think she is correct on this one). So I try additional hormone therapy until Friday and if the bleeding doesn't recede I will have to have a D&C procedure. In a nutshell, they put you out and scrape the lining of the endometrial wall to stop the bleeding. However, I am skeptical because if it keeps refilling itself up w/ blood, what good will the procedure do?

One of the biggest scares is that the absolute worst thing for me right now concerning my FM progress is to have surgery. Surgery is blamed to cause a high percentage of FM cases and I'm sick about this. I'm finally in the low 90 percentile of wellness and I do not want to have a set back. I cannot afford to stay at the clinic longer if my neck gets messed up.

I explained this to the OB/GYN and she said that I have a high pain tolerance she can not put me totally out and avoid being intubated. That worries me because I think I have a very low tolerance of pain due to my FM and the last time I had the 'conscious anesthetic' I was very much awake and kept asking for more meds due to the pain. But her and her infinite wisdom says that is the route to go.

If you haven't figured it out, I do *not* like this woman. However, she is the only one in South Lake Tahoe (SLT) that takes my insurance and she's the only one who has hospital privileges at the hospital that accepts my insurance.

My other big beef is that I don't think the D&C will help me in the long run. I think it may stop the bleeding for a while but my gut feeling (which is usually right on the $$ in terms of my health) is that it will start again and I will need to have a hysterectomy. I've tried asking all the OB/GYNs here that if I have to have surgery at all to just go ahead and remove all my parts. It doesn't matter to me since I can't have children, already have my tubes tied, am taking hormone replacement therapy via my BC pill due to PCOS, and am sick of bleeding. My bigger concern is that my maternal grandmother may have died of ovarian cancer so I want all of it gone if I have to have surgery anyway. (the reason I say 'may have' is that my grandma had surgery a week before she died and they found cancer near her stomach lining and also noticed that one of her ovaries was the size of a grapefruit. She had a hysterectomy 30 years prior so they were not sure where the cancer originated -- either the stomach or the ovary. I asked for an autopsy but that was not what my grandma wished so it wasn't done). .

My mom had a good point and that is that my insurance probably wouldn't pay for a full hysterectomy until I'd tried all other means of stopping the blood flow. That's right -- insurance cluster fuck. So I may have to have several D&C's until they finally allow this to happen.

So I'm stressed out, scared, and feel very alone. For reasons I don't wish to discuss, I am very cut off from everyone--my parents and J., too. Today I had to handle all of this on my own. It'd make even a normal person upset but when you add in the FM, it's too much to take.

I'm just hoping beyond hope that the bleeding stops by Friday and that this is an isolated incident. However, I still wonder what I will do if I have started, or will start, going through menopause. I want my parts removed for the sake of not getting cancer.

I realized today that I am so dependent on others and it makes me sick. I was brought up to take care of myself no matter what and I've failed that miserably. I can't provide myself w/ $$, J. pays for my insurance, my parents are paying for most of the treatment here, and I barely have enough $$ for food. I've kept my minimal savings since I quit work almost 2 years ago but that cash flow doesn't keep moving -- it can only go downward towards zero as I have no $$ to replenish it. I also know I am a burden in the regard that my parents and J. have to take care of all the house stuff and that I cannot even think about helping out for over a year. All of them are on edge and I don't blame them.

I seriously do not see why they stick around. I have nothing to offer any of them. I'm sick w/ FM and will have to battle that every day for the rest of my life. This means I may never be able to work again because I can't keep consistent hours due to FM and also because I have to spend so much time during the day to keep it at bay.

All I have to offer now is being a lump in the bed of the motor home and that lump ain't offering anything helpful to anyone. Not for lack of wanting but due to my physical limitations.

It was also brought to my attention today that I need to 'deal with my panic better'. Dear Whomever In Heaven -- I *am* trying. I've had panic attacks and severe anxiety for over 15 years. I take my meds every day (if I skipped meds, I'd be crucified by my family but the same isn't true for them), I've taken tons of cognitive behavioral therapy over the years, and yet I'm being asked what else I'm going to do to stop that.

I'm not sure how to explain this to all of you who are 'normal'. There is a limit to what I can do to stop my mental health issues from being a problem in my life. Drugs only go so far, as well as therapy. You add the pain/stress from FM into the mix and I just can't deal sometimes and I get panicked and lose my cool. Is this okay? *NO*. . but I don't have any other way of dealing with it.

Actually, that is not true. I've decided that when I've caused grief, pain, burdens, or hurt due to my emotional state, the best thing I can do is to cut myself off from people for a while and internalize the panic. No, this isn't healthy but I have no other options at this point.

So if you don't hear from me, don't be offended. I am in full hermit mode right now out of pure necessity to keep myself together & to avoid hurting those I love the most--which I definitely did today. I hate myself for not having full control over my emotions but does anyone have total control? Maybe they do and I'm just a fucking freak. . that's probably closer to the truth than anything else.

For those of you that I hurt or upset today, I'm sorry. I can't go back and fix it. I've made a decision of how to best stop any additional trouble to those I hurt today during my panic attack. I just wish people could understand how hard an anxiety disorder can mess w/ you mentally and physically. But I know that only my actions will make things right so that's why i'm going to take some time off from my so-called public life.

Thank you for listening to this rant and please know that if I hurt you, I'm terribly sorry. There is never an excuse to hurt another person's feelings and I'm sorry for all the pain & trouble I've caused. I wish I were a better & more evolved person.

l_l