I know I must seem rather up and down these days. Probably because I am. Mostly down. It's not always glaringly obvious. I'm not curled up in a ball in my bed. I'm living life, just not well. It really doesn't help that I didn't get to see a psychiatrist until the end of June and that I still haven't gotten authorization from my insurance company for my new antidepressant, thanks to a pharmacy that didn't notify my doctor's office that they needed to authorize it until Last Thursday. Are they trying to drive me crazy?

The hardest part is the variety of negative emotions that I'm feeling here. There's sad. Sad just sort of lies over everything when you're depressed though. Sometimes it's the primary player. Like the jarring sad that hit me as I walked around the mall tonight and saw all of the big pregnant women in tee shirts that looked like they were working ever so hard to stay wrapped around those plump bellies. Like the sad that forced me to look away and bite my lip after I made the unconsciously bad joke that the little man had about as much chance of getting car insurance that I did of getting life insurance. Ow. That one hurt. And I did it myself! Sometimes I forget that it's still too raw for sarcasm...It may always be. But I'm a sarcastic ass who's in love with another, so I doubt that even while we're careful sad will not be here to stay. Hopefully it won't always feel like such a punch in the gut.

Anger is the other major player in my little depression here. Anger without focus. Anger at a situation. And how can you be adequately angry at a situation that no one else caused. There is no one to scream at, no one to blame for all that I've lost. Even at best this disease will just shorten my life by a decade or so and prevent me from having children (without taking a more than 50% chance that it'll kill me). There is no scenario here where I go into remission and live on into old age. Lupus always had that hope - I could live with it as long as anyone else might live; I could have children, even though it would be high risk; I would be able to pursue the activities that I enjoy, the things that I love; I would always have to be medically aware and careful to take care of myself, but it was nothing like this. This rips away giant pieces of what I wanted for my life, this will rip away my life itself. If that wouldn't make you angry, you're a saint.

But then there's the frustration that comes of the anger. The frustration at having no where to direct it. Being angry at a disease is quite possible, but there's no fulfillment, no end to the anger because you've gotten your point across or ended the situation or hurt that which was angering you. I feel like my hands are bound and my mouth is taped. Because apart from the frustration of not being able to focus my anger on something tangible, I also frustrate myself by restraining what I show to the outside world. Putting on a happy face. Acting normal. Going through the motions. I feel like an asshole for doing it and it frustrates me endlessly. But what option do I have? Can I really tell all of them when they ask how I'm doing? BF seems to be the only one who sees through my facade and I love him for it. But I don't want everyone in my life to worry, I don't want their lives to be changed because of my depression, I don't want it to reach out any further than myself.

And that's where frustration turns to guilt. Guilt that my mom and dad have to deal with this. Guilt that my brother no longer greets me with raucous humor, but instead asks how I'm feeling with a genuine air of concern in his usually carefree voice. Guilt that BF is too in love with me to leave and have the full life that he deserves. Guilt that I will someday leave him. Guilt that I lie with that happy face and tell them that I'm doing alright. Guilt that I still want to find a way to have a baby (should my health hold up) that I leave behind very very prematurely. Guilt that I'm not big enough to just be the best step mom to the little man that I can be and be happy with that. Guilt that I can't just dream of being the great aunt. Selfish. Guilt for putting BF in a situation where he could be a widower with a young child. For asking that he take that risk. Guilt for feeling guilty for all of this. Sad for feeling guilty.

I'm not looking for pity. Pity is the last thing that I want. Maybe this was just for a bit of understanding. Maybe this was just to vent. Maybe this was just the end of a long, depressing day following a whole bunch of depressing days and I couldn't keep it to myself anymore. I'm sick of weeping. Sick of choking back tears. I won't cry though either. If I start to cry I just feel more frustrated and angry and guilty that BF has to be the one to deal with a woman who is sobbing over lost dreams that he shared. Sad and Guilty and Selfish and Angry and Frustrated that he's not sobbing too. The sobbing never lasts long and doesn't happen often because I find self pity so damned repulsive that I've soon talked myself out of sobbing and just lay quietly, a heaving mess, trying to catch the air in lungs that are now my enemy.


  1. Rachel,
    I have been following your blog since you posted its addy on PHA message board. I think you really need to go see a PH Specialist and ASAP! A PH Specialist is a doctor who specializes in patients with PH and most of them only see PH patients. Trust me it will make you feel so much better if you do this! Go to PHA website and look for find a doc and see if there is one in your area. Seeing a PH specialist will also help you get on the correct treatment for you. Not everyone can take all treatments so this is also a reason you need to see a specialist. A pulmonologist that is not a PH specialist just does not understand this disease well enough to treat it. Also I have not seen anything that says what your Pulmonary Artery Pressure was when they did the RHC.

    Just because you have PH does not mean that you are going to die in a few years. You could live for a very long time with the right treatment. You really need to try and get out of the feeling that you are dying, all that is going to do is make you more depressed. There are options now that was not available even 5-10yrs ago. People are living a long time with this disease.
    Please think about going to see a PH Specialist. You will be so glad you did!
    Sorry if this sounded harsh for I did not mean it to be that way, but I also wanted to let you know that things can get better even with PH and it is not the end of the world to be diagnosed with it! If you happen to have mild PH then there might be a slim chance you MIGHT can have a baby. Again a PH Specialist is the one that could advise you on this.

    SheilaB from PHA message board

  2. Thanks for the advice about the PH doc, and I actually have seen two who are great. I'm lucky enough to live on the outskirts of Philly and I have access to so many pulmonary hypertension specialty centers it's ridiculous. Temple University Medical Center has a center that is fabulous and my Doc. both went to school and worked there before going into private practice. Both docs think that the Letairis and possible sildenafil once they get the results of the new echo and 6 minute walk that I had last week back. Good docs, very much on top of things. :)

    Oh and my ABP was in the 70s during the cath. So we're not talking mild anything. But I have surrogates lining up already, so if I stay well I will have a baby.

    Unfortunately knowing all I do and feeling like I do seem to be unconnected. The ifs are my biggest worry...It's pointless to worry, I know, but it's getting to be a much smaller hole in my chest everyday.