Brandon and I had a conversation last night. It was very brief and we both were a little closed off about the whole topic. But it's been weighing on my mind today. I mostly push the bigger, broader things in my life away to arms length so that I can focus on the day-to-day. I don't ignore it or pretend it's not there, but I don't want to spend every day wallowing in self-pity and depression. It's not who I am. This particular topic of conversation is one of those things that brings that stuff on.
I was walking through Walgreens yesterday afternoon while waiting for my prescriptions to be ready. Every time I walked by something designed for children or mothers, I made a little light notation that I would probably never need that.. or that... won't need to worry about that problem, or those. It's moments like that when I have that little ping hit me that while I really hope it's not true. The little ping feels like the realization that I will never have children. I will not be a mother. Inside my body, that sentence sounds like "I will.... never (feeling of dread, disappointment, sadness and fear mixed with a skip of my heart and the sound of tears in my head)... have.... children. Oh god. How can I never be a mother? I'd make such an excellent one. I deserve to have me passed on. Why am I not allowed? What did I do wrong? Why not those other people who do such horrible horrible things? Why are they allowed to have children anytime they want and I am not? I don't necessarily believe in a higher power, but that doesn't keep me from being angry at God when I feel that way. And all of these pings... these thoughts of helplessness and sadness seem to pass through me within a matter of seconds. And then I move on with my day...
Sure, it takes me a little longer to be happy for someone who is pregnant or adopting. I am happy for them. Or at least I will be.... eventually. But I can't be at the beginning. It's the stab of jealousy and smidge of anger I feel towards that person for having what I am seemingly incapable of. It really makes me angry with people who have a small horde of children (and sometimes a large horde) and they want to complain about how those children are affecting their lives. PLEASE be careful about what you say to me because it is absolutely not below me to remind you of what you have in a way that will/should make you feel horrible about it.
Now the reality of it is that I wouldn't get pregnant if I could help it right now anyway. I'm so close to healing with the PG and I need to be on the drugs I'm on for a big longer. And then, because of the painful side effects, I need to wean off of them. I can't take them at all if I'm pregnant. Not to mention, I just would much rather be healthier if I'm going to be carrying a child and then caring for one. It's just common sense.
As any female (and many many males) know, common sense, logic and emotions are very often NOT on the same wavelength. So I get a little depressed. I certainly don't bring up the conversation with Brandon. He got a little wind of my thoughts last night and got the impression that I've given up an formed the opinion that I will (absolutely) never have children. I don't want to feel that way. I want to continue to think that there is hope. That somehow, I will heal from all of the current stuff, get all the other stuff in order and magically be healed hormonally. It's a bit of fairyland promises to myself. I don't necessarily believe them... all the time.
I guess the bottom line is that I want to have children. Very badly. I know that Brandon does too. He's even picked out the lullaby he would sing to the babies. He deserves to be a dad. I want to give him that. After all, he gave me something very special in marrying me. I want to be able to walk around the baby stuff and say "thank goodness I don't need that stuff anymore!" because I've already had to use it once (or twice). If I'm sad, or standoff-ish around your pregnant self or your children... or your happiness, I hope that you understand. It's not about you. It's about my dealing with my own emotions. Maybe now that I've written this down, I can get back to doing productive things instead of thinking about it.
Wednesday, August 14, 2013
Monday, July 29, 2013
Medical, Issues, and Apologies
I never seem to know the proper place to be able to vent about my...erm...issues. Mostly medical. I can't stand that person in the crowd that seems to have nothing to do but complain about everything that's wrong with them. I most certainly don't want to be that person. The problem is finding that balance. Where do I stop telling people so that they aren't over-informed and feel burdened by it but still manage to know what's going on in my life. There are so many people who really don't know what is truly happening with me and there are a few who do. I honestly don't know who's who anymore. So I'm writing this here for those people and I will link it to my facebook account with your names tagged so that you can try to get an idea of how I'm feeling and what's going on. I've gotten into the routine of responses like "I'm ok today. Today is a good day," and "I've felt better and I've felt worse" with a big grin and joking nature to try and push it off to the side. Honestly, for the most part, I do feel that way much of the time. Maybe like 85-90% of the time, I'm ok or better. Unfortunately, the left over 10-15%? It stacks up. And then I get it all in my face at one time in a big bang.
I know this... I am in a rough spot right now because I just...feel... tired. I'm tired of people, work, pain, electric shocks, medication, MD appointments, and mostly of just being tired. I've always been fiercely independent. But I'm just not anymore. I want to be. Very very badly. I want to be able to nudge things out of my way with powerful muscles (they are under there hiding amongst the fat) like I've always been able to do. But I can't. I want to be able to walk more than a 1/2 mile without it causing me pain in one or all of a hundred ways. But I can't. I would like to have the stamina to even think of walking 1/2 a mile anymore since the pain began. But I can't.... I would like to not have to depend on other people to help me into a standing position from time to time because of the pain involved in getting up and down. It's so much easier (and painful) just to stand for a long time and then sit for a long time so I don't have to go through the pain of up and down and the uncomfortable nature of having to ask someone else for help. And being me, it really doesn't get much easier as time goes on. I've been counting on my sweet sweet husband to help me in times of pain and exhaustion for longer than we've been married. I would love to be able to give him a break. All of those things....but I can't.
More importantly, I would love to be able to lose it when I want, cry when I want and otherwise freak the fuck out whenever I want to. But I can't. Because while the help I ask for may be an inconvenience (usually to me more than them), none of the people I see and deal with on a regular basis deserve that. I am. Just. So. Very. Tired. I think I'm honestly probably too pooped to even begin to freak out. I'd probably lose it. I have thrown things in frustration and anger in the last month when I haven't do anything even close to that violent in many years. Not even when my mother was alive and making me angry every day.
So here's the medical crap going on with me so those of you who don't know, can catch up. I have an autoimmune dysfunction called Pyoderma Gangrenosum. You can click there for the link to read the blahblahs about that. It started with one little sore in May 2012 and was officially diagnosed during a hospital stay in August 2012. It's been a non-stop (I don't even know what to call this crap) ever since. I started with two wounds and ended up with 26 at it's worst. Right now I'm down to 5 stubborn little fuckers.
For me what it does is cause me to have to wear bandages 24/7 with frequent changes, infrequent bathing (no soaking the wounds in water for a long time b/c of bacteria and because it's effing painful), costs me time, money and energy to do almost anything outside the necessary. They believe that I have Psioratic Arthritis. I wasn't sure about that when they first diagnosed it. They aren't 100% and I was closer to 30%. But the longer my immune system gets whacked around with a bat, the more different types of autoimmune issues show up and I now am showing several different kinds of psoriasis. So much fun. Just let me tell you.
I have a once a month recurring (and expensive) treatment in New Orleans of immunosuppressant drugs that do exactly that. They suppress my immune system. It makes it harder to fight off illness and infection, but it's allowing my overactive immune system to chill out. I see this great surge of healing towards the end of that month. Right about the time all of the debilitation joint pain starts from the rumored psioratic arthritis. I'm leaking like a faucet with a missing stopper. Usually my legs are tinted yellow and pink. It's not pretty. And it smells pretty bad too. About a week after the treatments, I tend to get some kind of infection, usually cellulitis, in the tissue around my wounds. It's painful and my calves usually swell to twice their size. One of the therapists I work with is the one who noticed the trend and I've asked the dermatologist for preventative antibiotics at her suggestion. They would have probably worked this last time had I not spent several hours standing in the swamp after Brandon's accident. More recently, I'm also having a problem with my nerves. I get electric shocks of nerve pain that rolls from my knees to my feet. It's like that sensation of the chills only more painful and very very frequently. That's really only the stuff I can think of off hand. One by one, these things probably wouldn't be so problematic. However, the fact that I deal with all of this on a daily basis for the last 1 year and 2 months makes it utterly exhausting and I'm running out of good mood juice. But I'm trying. So please bare with me while I attempt to get all of this (emotions n shit) back under control. If I snap at you or ignore you or seem like I've written you off, I haven't. I just want all the other crap to end so that I can get back to my happy, bubbly self (or as happy and bubbly as I'm capable).
I love you and sorry I'm so long winded. :)
I know this... I am in a rough spot right now because I just...feel... tired. I'm tired of people, work, pain, electric shocks, medication, MD appointments, and mostly of just being tired. I've always been fiercely independent. But I'm just not anymore. I want to be. Very very badly. I want to be able to nudge things out of my way with powerful muscles (they are under there hiding amongst the fat) like I've always been able to do. But I can't. I want to be able to walk more than a 1/2 mile without it causing me pain in one or all of a hundred ways. But I can't. I would like to have the stamina to even think of walking 1/2 a mile anymore since the pain began. But I can't.... I would like to not have to depend on other people to help me into a standing position from time to time because of the pain involved in getting up and down. It's so much easier (and painful) just to stand for a long time and then sit for a long time so I don't have to go through the pain of up and down and the uncomfortable nature of having to ask someone else for help. And being me, it really doesn't get much easier as time goes on. I've been counting on my sweet sweet husband to help me in times of pain and exhaustion for longer than we've been married. I would love to be able to give him a break. All of those things....but I can't.
More importantly, I would love to be able to lose it when I want, cry when I want and otherwise freak the fuck out whenever I want to. But I can't. Because while the help I ask for may be an inconvenience (usually to me more than them), none of the people I see and deal with on a regular basis deserve that. I am. Just. So. Very. Tired. I think I'm honestly probably too pooped to even begin to freak out. I'd probably lose it. I have thrown things in frustration and anger in the last month when I haven't do anything even close to that violent in many years. Not even when my mother was alive and making me angry every day.
So here's the medical crap going on with me so those of you who don't know, can catch up. I have an autoimmune dysfunction called Pyoderma Gangrenosum. You can click there for the link to read the blahblahs about that. It started with one little sore in May 2012 and was officially diagnosed during a hospital stay in August 2012. It's been a non-stop (I don't even know what to call this crap) ever since. I started with two wounds and ended up with 26 at it's worst. Right now I'm down to 5 stubborn little fuckers.
For me what it does is cause me to have to wear bandages 24/7 with frequent changes, infrequent bathing (no soaking the wounds in water for a long time b/c of bacteria and because it's effing painful), costs me time, money and energy to do almost anything outside the necessary. They believe that I have Psioratic Arthritis. I wasn't sure about that when they first diagnosed it. They aren't 100% and I was closer to 30%. But the longer my immune system gets whacked around with a bat, the more different types of autoimmune issues show up and I now am showing several different kinds of psoriasis. So much fun. Just let me tell you.
I have a once a month recurring (and expensive) treatment in New Orleans of immunosuppressant drugs that do exactly that. They suppress my immune system. It makes it harder to fight off illness and infection, but it's allowing my overactive immune system to chill out. I see this great surge of healing towards the end of that month. Right about the time all of the debilitation joint pain starts from the rumored psioratic arthritis. I'm leaking like a faucet with a missing stopper. Usually my legs are tinted yellow and pink. It's not pretty. And it smells pretty bad too. About a week after the treatments, I tend to get some kind of infection, usually cellulitis, in the tissue around my wounds. It's painful and my calves usually swell to twice their size. One of the therapists I work with is the one who noticed the trend and I've asked the dermatologist for preventative antibiotics at her suggestion. They would have probably worked this last time had I not spent several hours standing in the swamp after Brandon's accident. More recently, I'm also having a problem with my nerves. I get electric shocks of nerve pain that rolls from my knees to my feet. It's like that sensation of the chills only more painful and very very frequently. That's really only the stuff I can think of off hand. One by one, these things probably wouldn't be so problematic. However, the fact that I deal with all of this on a daily basis for the last 1 year and 2 months makes it utterly exhausting and I'm running out of good mood juice. But I'm trying. So please bare with me while I attempt to get all of this (emotions n shit) back under control. If I snap at you or ignore you or seem like I've written you off, I haven't. I just want all the other crap to end so that I can get back to my happy, bubbly self (or as happy and bubbly as I'm capable).
I love you and sorry I'm so long winded. :)
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