My latest

I am writing this to let people know what’s going on with me lately. I know that several of you have asked, so here it goes.

I have had awful, terrible, painful, and excessive periods since I was 11 years old. I have been to no less than 8 doctors over the years and not one has listened to me until recently. My nurse practitioner (NP), Kim, has been great. She started a lot of bloodwork and has been following me closely.

My back is still a mess. I am in so much pain whenever I move. I am dealing with that because nobody can seem to figure out what’s wrong.

My blood: iron, vitamin D are getting better. My constant exhaustion/sleeping is most likely Epstein-Barre Virus (EBV), which is the virus that causes mono. I probably never got over it when I had it last year and without rest, it will become chronic. It is awful. I am asleep again by 10:30 almost every morning, then usually again in the afternoon.

The big things Kim found were that my testosterone is high (76 and it should be no higher than 78) and my DHEA, which should be between 400 and 722, is 1537. 1537. This is a pretty strong indicator that I have PCOS, which I have been asking about for at least 10 years.

The last gyno I went to (last month) decided that she was doing a biopsy of my uterine fibroid, which is now up to 7cm, without anesthetic. And then she might not be able to do it (or an ablasion) b/c of my size. HELLO? It’s my fucking vagina, not my stomach.
I went to a new gyno here in town today and I love him. From the minute I told him about my symptoms and bloodwork, he said, “You’re classic PCOS.” No kidding. He went through my entire history with me and immediately made plans. He is doing another ultrasound and more bloodwork tomorrow. If it is PCOS (not likely to be anything else), he will start me on the meds for it. I go back in July to go over all of my results and to schedule surgery. He is doing a procedure where he puts a camera into my uterus to look around, then doing a D&C, which he will biopsy. (I can’t have an ablasion if there is any cancer or pre-cancer.) Assuming that comes back clear, I go back a month later to have one of two ablasion options. The better one is probably not going to work due to my fibroid type, but the other one will get rid of 70% of my endometrium. (An ablasion is where they burn off the uterine lining. It stops or decreases bleeding/clotting.)

I can’t tell you how amazing it feels to be taken seriously. All this time, people have said I have problems because I’m fat. He was so angry about the way I’ve been treated by these doctors. If it is PCOS, that’s probably why I’ve gained so much weight, especially in the way I’ve gained it.

It shouldn’t have taken me 24 years to get this fixed. It shouldn’t have taken almost 10 doctors. I shouldn’t have had to leave my primary PA b/c she thinks that my back pain is because I’m fat. I am just thankful that things are moving ahead. If I can just get this depression under control, I will feel better. Well, I need to get the EBV to calm down b/c I feel like a zombie. I don’t care about anything – eating, going out, nothing. And the pain keeps me housebound b/c if I do go out, I pay for it for days.

Anyway, I’m feeling a lot lighter tonight. I’m feeling justified and not crazy. I’m thankful to all of my friends for not walking away. I know that I’ve been distant and crappy for a long time. Depression, chronic pain, and sickness are really difficult to deal with; both for the person suffering and for those around us. Thank you.

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Once again, I find myself here.

By the time the kids go to bed, I’m too tired to write anything. I wanted to write about “obesity is an addiction” and “Go watch showX to feel better about yourself.” It took me 2 hours to get the babe (who is almost 2 and not a babe anymore, I know) to sleep tonight. I am exhausted. Guess the writing will come tomorrow?

I think that I need to get retested for mono. I’m feeling pretty tired again. It may be the depression and lack of activity, too.

Dis/ability

I have been so down the last few weeks. I thought that I was getting better–and I have in ways–but I tried going to the grocery store a couple of weeks ago and just fell back almost to the worst I’ve felt. I am better, but it is because I am following orders to not do anything outside of my normal in-house things; walking around, doing basic housework, etc. I can’t even do much of that without a lot of pain. We had to go to Target today and after having made a circle around the perimeter of a very small TJ Maxx store, I knew that I couldn’t walk through Target. I broke down and used one of the motorized carts. I’m not patient and I keep wondering if I will ever be able to walk again. I can walk, I just can’t do it for long or without considerable pain.

When I talk about this, I am aware of the able-body privilege with which I frame my understanding. While I have always had back problems since I fell on my tailbone as a young child, I have never been unable to walk or carry my kids. This last pregnancy really started all of this. Anyway, this is where my mind is. Part of me is averse to using the moto-carts because of how people will look at me. I am fat, and they will think that I am being lazy or that I would be able to walk if I weren’t so big. I know that I need to let that go, but it’s really hard. It was amazing to be able to get around the store with less pain. I was also not in the town where I live and I am not so sure I would use one here at home. But why? People’s assumptions should not even play a role my desire to move freely. I find myself wondering if I will ever be “normal” again, knowing full well what an awful thing that is to say. What the hell is normal? Are people with disabilities abnormal? Of course not. That’s a life-time of being able-bodied talking, remembering what “normal” has always been for me.

I’ve had so many well-meaning people tell me to try A, B, or C. I know that running 5 miles a day works for some people, but it won’t help me. I know that a raw food diet could make me feel better, but I can’t afford it and I’m too depressed to care anyway. I get that people are trying to help, but I hate the assumption that they know what is best for me. I have been dealing with this for almost three years. I know, as a massage therapist, what is going on in my body (to a degree). My chiropractor, PA, and physical therapist are all telling me the same thing; do nothing until we can get this under control. Christ, being in the water is painful. Trying to walk and exercise even with the help of the buoyancy makes me tear up in pain. Sometimes I’m even lucky enough to have muscle spasms while I’m still IN the water. Imagine how that feels when I have to haul this huge body back into normal gravity.

I’m just so sad that I can’t do things with my kids or walk through the store. I’m pretty much okay if I don’t move around, but I can’t even stand up to make dinner or wash dishes. My ass hurts from sitting so much. My muscles are weak from injury. My brain is in overdrive and underdrive, both at the same time. I just want to be better. I’m not ready to face 50+ more years of pain. Then, of course, I feel guilty because I have friends who suffer from chronic pain. E has a head injury now that has been going strong for three weeks. J has RSD, an extremely painful disorder that I can’t even begin to imagine having to live with for the 10 years he has. I have no idea what it’s like to live with fibromyalgia, which several people I know have. I am thankful that I have the health that I do (which, other than the mono, asthma, and the reproductive issues–which are awful and I would rather rip my own uterus out than deal with anymore–is very good).

The gist of this story is that I am sad and frustrated. I am trying to learn how to deal with this new phase of my life, which is very difficult because I’ve always been physically strong and healthy. I’ve only been in PT for a month – I know that I need to be patient.

Disappointed

I really want to be better about blogging, especially regarding social justice issues that are important to me. Lately, however, it is not possible. Now that D’s schedule has changed, I should be able to find more time since he’ll be home most days with us. I can’t wait to have a dedicated office/library space when we move!

I had a follow-up appointment today at the ENT to discuss the results from my sleep study. I hardly slept that night, and it felt like a good breathing night. However, I stopped breathing about 15 times each hour. (I think it was each hour, not each minute.) I go back in early February to be titered for a CPAP machine. I am hoping that this will help to alleviate some of my exhaustion during the day. Apnea can cause a range of health problems and I’m excited to see how I do once I get used to the machine. I don’t want to get my hopes up too high, though. Disappointment is rough.

“quotes”

I clicked on a link on the Yahoo! main page about the death of an heiress because I did not know who she was. Apparently she died recently, at just 30 years old. What bothered me about the article is this:

In recent months, Ms. Johnson had been romantically linked and “engaged” to reality-TV star Tila Tequila.

Can you tell what bothered me? The quotes around the word ‘engaged.’ I guess people can only be engaged if they are an opposite-sex couple. I guess that all of my gay “married” friends aren’t married like I am. Now, I could be reading more into it than I should, given that the only thing I know about Tila Tequila is that she had a reality show on MTV (?) about finding love (I think?). There is the possibility that they weren’t actually engaged, but I doubt that’s the reason for the quotes.

Where I talk about how I’m feeling today

This post will probably sound like a bitch-fest and, quite frankly, I’m okay with that. I’ve been feeling very depressed lately, similar to how I felt over the summer. While I do suffer from clinical depression, this is something in addition to that.

I love my kids more than anything on this planet. I would do anything I could to help them grow into kind, interdependent, and peaceful men. Part of that is having a parent at-home with them and homeschooling. We also practice non-violent parenting (or at least try – we never hit our kids, but we do struggle to not yell or revert to punishments… it’s a learning process, for sure). When Bug was born (he’s almost 10), I was home with him all the time. Dave was working, I stayed home. I got a little stir-crazy sometimes; I would talk Dave’s ear off when he’d get home because he was the only adult I talked to most days. Bug nursed a lot, for a long time (he was 3.5 when he weaned himself), so I often got “touched-out,” but that was the extent of it. I was able to take him out to stores, play dates, to visit family, and so on. When Gus was born (he’s almost 2), things were different. Dave and I had gone back to school, Bug was fairly independent (as much as a child can be), and I had an idea of the world beyond my child. Gus was a surprise, to begin with. I was thrilled and terrified. The pregnancy was riddled with complications: a confirmed miscarriage, which was later found to be mistaken, spotting, pain, contractions, bedrest. He was a tough baby. I think that a lot of it stemmed from the way he was born (prematurely, in the hospital, with all that a hospital birth entails) and what happened to him in his early weeks (bili-lights that I knew were unnecessary, having his foot slashed open almost daily for blood work, having to pump milk to feed him from a bottle because he was so small, etc.). I had Reynoud’s Syndrome in my nipples and he was never a great nurser. He was done nursing entirely shortly after he turned one. I am still sad about that because in my perfect world, he would still be nursing.

Since then, things have gotten more complex, as they do with multiple children. Over the summer, as now, I was home 24/7 with the kids while Dave worked. I was so depressed. Currently, I’m trying to recover from mono (which isn’t happening super fast because I don’t have time to rest – I was supposed to be on as close to bed rest as possible) and dealing with the culmination of over two years of inactivity and pain. The pain in my back was so bad that I would be close to vomiting after going to the grocery store. I can’t bend down to pick things up, pick up my baby/toddler, walk, stand – it even got to the point where sitting and laying down were excruciating. I’ve gained a lot of weight, probably in part because I’m so inactive, but I’m finding it difficult to be physically comfortable in my body. (I refuse to get back on the diet rollercoaster because it’s bad for the body to yo-yo, which is what happens in 95% of cases. I am a firm believer in Health at Every Size and that body weight and/or health are nobody’s business, and surely aren’t moral issues, in so far as being fat or unhealthy –which do not always go hand in hand– are concerned.) I finally went to the doctor and she gave me a muscle relaxant and an order for physical therapy. I thought that I was getting better until I went to the grocery store the other day. I wore my TENS unit (electric stimulation) but even that didn’t stop the pain. I’m not used to being weak. I have always been strong, and now I struggle to lift things that shouldn’t be a problem. I am definitely better than when I started – the muscle spasms were unbelievably painful. However, I still can’t go anywhere with the kids because I can’t get Gus in or out of the car alone. I am stuck in the house, which is a mess beyond words (partly because I suck at housekeeping, partly because the pain is preventing me from getting on top of cleaning). The kids are loud; Bug talks ALL THE TIME — he narrates what he’s doing and tells stories all day. Gus is just a toddler and needs constant supervision. It would be better if we had more space, a clean house, and if I could leave. By the time Dave gets home from work, it’s after 5. We have to start dinner, which means that Dave has to do most of it. He stands on concrete for 8 hours a day. He deserves a break when he gets home. I deserve a break, too. But we don’t get them. Gus usually falls asleep by 8pm, but Bug won’t sleep. He is either scared to go to bed or fights about going. Dave and I don’t even get quiet or alone time at night, and I can’t remember the last time we went out together. By then, I’m too exhausted to enjoy it anyway. I am asleep before Bug comes to bed most nights. Either that, or I can’t sleep. During the days, I am so exhausted that it hurts; my body aches from tiredness.

During the days, I want to write. I want to think. I want to read. I haven’t read a book for pleasure since before Gus was born. I want to work on my paper, but I can’t. I need to have at least one eye on Gus all the time and I’m tired. I’m exhausted. Part of it is the mono, I know, part is my nutrition (I just don’t care about eating), and part of it is my depression. Another aspect is the apnea I’ve had all my life. I finally went for a sleep study but couldn’t sleep. I don’t breathe at night. I sometimes wake up gasping for air. Dave often wakes me because I stop breathing. (Gus does it, too, which scares the shit out of me.) I feel like a hypochondriac, but I’ve let my own health go for so long that it’s building up. I wish that I could go to the chiropractor, acupuncturist, and massage therapist, but I can’t afford that. As it stands, Medicaid only approved 12 PT sessions; I’ve already had 4.

Money is another constant drain. We have none. Zero. Dave is working full-time, but our bills are so high and we are so far behind. We get food stamps, thankfully, but everything else is out of our range. Even if I could find a job with my (hopefully temporary) disability, we would lose a lot of food stamps. It doesn’t make financial sense to bring in a little money, but lose a lot of assistance. The system is not set up to help people get out of poverty or off of assistance. We can’t even get HEAP this year because we owe them (social services) money. Being scared of a utility shut-off or not having enough food is terrible. I want to stop eating meat, but it’s too expensive to buy more produce and vegetarian food. I refuse to let my wants come before my kids’ needs. I get mad, too, that we don’t get to have tv. It’s the first thing that goes when money gets tight. Why shouldn’t we have entertainment? We worry so much and work so hard to get ahead, but we can’t even watch tv. We were using it for homeschooling, too. Several of the channels have program guides and curricula that have been very helpful to us. But we don’t deserve tv. We don’t pay for internet, thankfully, so at least we have that. Sometimes, though, I just want to sit in front of the tv to watch a mindless show. I don’t think that’s asking for too much.

We are supposed to move into our house in the Spring. However, there is so much work that needs to be done. We need a fridge and a new oven. The floors need to be refinished and we need to store furniture that’s already there. My mother doesn’t have the money because her tenant hasn’t paid her rent in months. We are in the process of evicting her, which we should have forced mom to do before. We tried, but she felt bad for the girl. We have great people ready to move into the other house (grandma’s), and they will help fix it up. I don’t know how to get these things done. Our entire tax return will be going to mom to pay the taxes on the house (she will still own it, we will rent it). I can’t move my kids into that house until it has been cleaned. And it needs a serious cleaning. It sat empty for several years, then a woman rented it for a few months before she had to be evicted. There were mice, which have now been taken care of, but there is mouse shit in cupboards. I am not cleaning that; that’s a job for a professional. I’m afraid of the utility bill there, but we could use the space. I can’t deny the fact that moving into the house where I grew up is really nice. It’s a gorgeous house, it’s just not the greatest neighborhood. However, the Italian couple across the street has been there since we moved in (they have lived there 36 years, we moved in about 3 years after that). One of my professors lives next door to the other house my mom owns, and hopefully people we know will be moving in to that house.

Of course, I feel guilty for thinking we need more space. This place would be okay if we had one more bedroom and a bit more storage space. As it is, we have a small bedroom and an even smaller room that is Bug’s space. It is really more like a tiny office. We don’t have room in our bedroom for a bed for Gus, which he will want soon. My guilt stems from the fact that other people have far less than we do; less money, less space (if any), less of everything. I am privileged in that my mother was able to buy her own house and is now passing that on to us. As poor as we are, we still benefit from white privilege more than any other privilege we have. I have a hard time finding a place of comfort in what I have, and I feel horrible when I wish for more. I don’t wish for a lot, just enough to pay our bills and live without fear, but that’s more than others have. I want more than anything to have enough money to help out other people who need it (and to rescue/adopt abused dogs). I know how it feels to live in such fear and I don’t want anyone else to have to go through that. Except for those who would deny assistance to people or who feel that we are poor because we are lazy. How fucking lazy are those who inherit money? No, they may not be lazy, but they will never have to do backbreaking labor to only pay one or two of their many bills. Anyway, that could be a book in itself…

My Gus is napping, my Bug is playing in the other room. I’ve had the time to finish ranting here, for now. I’m very tired. My house is a mess. We need groceries. Our heat is about to be shut off. And all I can think about is the special Time Warner is running right now: $99.95/month for 12 months for digital cable (which usually costs that much on its own), Road Runner, and digital phone. I want my damned tv back.

Kids speak truth

I was at my sister’s house today between PT and hair appointments, when she got the newest People magazine in the mail. Her younger son (4) saw a bikinied woman and said, “Mommy, she looks like you!” We laughed about how sweet it was. When their dad got home, we told him the story. He sat on the couch with their older son (6) looking for “mommies” in the magazine. He said, “Nope, no mommies in there.” So I said, “Maybe you can find some Aunt Stephies in there.” Their dad said, “Yeah, I saw a couple.” The older son said, “I did. I saw like 8 of them. They were ugly.” It was the weight loss issue, something I would never allow in my house, and he was obviously looking at the before photos (as was his dad). I know what I look like and it is already hard enough for me to leave my house sometimes. I’m not proud to admit it, but sometimes being ugly limits what I do – I feel like I can’t make others have to deal with my looks. I have serious social anxiety issues because of my appearance. There’s something about hearing it in spoken words, though, that makes it more painful. I haven’t heard anyone call me fat or ugly to my face in years – maybe decades. I know they say it – christ, I could tell a story here that would make most people raging mad – but I don’t hear it. Hearing it brings it to an entirely different level.

Sometimes all I can say is fuuuuuuuck. I really hate myself sometimes. Sometimes I wish I was someone else, but then realize that I wouldn’t really want that. I just need the world to change.

Physicality

I feel like I need to talk about my body. I know that people assume that my problems are because I’m fat, but they aren’t. I hurt my back originally when I was very little – 7 or 8 maybe. I fell directly on my tailbone when I was trying to learn how to roller skate. I remember the pain and not being able to breathe.  It’s always given me problems– sometimes pretty severe. My lower back was pretty bad when I was pregnant for Liam, but it was fine shortly after he was born and once I got used to positioning him better while he nursed. Before I got pregnant for Kieran, I was actually almost 100% pain-free. That changed almost as soon as I found out I was pregnant.

Part of what happens to the body during pregnancy is that the tendons and ligaments start to relax, which in turn loosens the joints, including the pelvis. This is part of why pregnant women waddle.  For me, it was excruciating. My pubic bone was on fire most of the time and would pop if I moved just right. Dave used to have to help me roll over or sit up. Sitting up was unbelievably painful because my back would have to pop from whatever position it was stuck in. Because of the other issues I had while pregnant, I was on as close to bedrest as possible, including actual bedrest toward the end. Because of this, I couldn’t exercise, walk, do anything, really. With Liam, I was very active, did water exercise a few times each week, walked, etc. With Kieran, I wasn’t allowed to because the pregnancy was already so compromised.

Things just didn’t get better after he was born. I’ve had to have help with so much, including carrying him, since his birth. Liam used to be carried and held all the time; in a sling, in my arms, a back carrier. Kieran is not so lucky. Of course, when one is in so much pain, physical movement is almost impossible. I’ve had so many people tell me to just exercise. I have been under orders to NOT do that for two years now. That takes a toll on the body. I have always been really strong and flexible. Now I can hardly lift Kieran. The pain in my back is so bad that I want to throw up most of the time. Sometimes I just can’t move. Sitting or laying down used alleviate it a bit, now even that kills me. My muscles are starting to spasm and I am just so down all the time. I can’t clean my house, I can’t stand up to cook or wash dishes. If I do something (like go to the store), I pay for it all day.

Chiropractic and massage help a lot, but I can’t afford that. I broke down and went to the doctor today. She ordered xrays and physical therapy, and gave me a muscle relaxant. I have to say, I am excited and terrified to try it. I hate to take drugs and get very scared of side effects (especially with my asthma), but to think that I might have relief is amazing. I start PT on Thursday and am nervous about that. She wants me to do aquatherapy, too, but I don’t know if Medicaid will cover me being in a pool. That’s probably considered funtimes. I looked at my xrays… my back is a mess. When I was laying flat on my back, my spine curves to the right, making a C. My right hip is hiked up inches higher than my left. My sacrum looked pretty over-flexed, too. I am willing to do anything at this point to help. I’m scheduled for PT 2-3x/week for 6 weeks. I just want to be a good mom again and to not be in constant, extreme pain.

Holidays

I usually love the holidays, even though I don’t celebrate Christmas. Because I don’t consider myself religious, I feel hypocritical celebrating one of the most holy days in the Christian calendar. Instead, we celebrate Solstice, or Yule, which is also our wedding anniversary. What I love about the holidays is the feeling I get. I love the weather, the lights, the music, the togetherness.

This year is very difficult for me. Because we can’t do anything for the boys, I’m feeling pretty down. It’s hard to hear about other people shopping and giving gifts, though I do not begrudge them that. I am glad that they are able to, especially knowing that a lot of them have been extremely poor themselves. I’ve said it before, but I don’t want my kids to grow up attached to the idea of “things.” Even though my mother was poor when we were growing up, she always had gifts for us and my aunt and uncle made sure that our living room was filled with gifts – literally. One year, my uncle took our lists to the store and had the clerk gather everything we asked for. My mother told him to never do such a thing again! It took me a long time as an adult to get over not having a lot to give others because of the way I grew up. Christmas was excessive in my house, but I think it was probably due to the fact that my mom couldn’t do a lot for us throughout the year. That’s rather how I feel right now. We struggle so much to get the boys even the basics that we don’t often have anything extra or fun for them.

I am trying not to be jealous. I don’t care that I won’t be getting gifts, but I care that I can’t give to anyone. Our wedding anniversary is on Monday, and I think that I’ve always had something for Dave, even if just a card that I’ve made. I don’t even have that this year.

I’m also trying not to remember that someone owes me $200 and that I could use that money to buy gifts for my kids or pay bills (I would never spend $200 on presents!). It’s even harder because I know that this person is out buying more things for her own family today and doing a fun event. I don’t want to be that person because she really needed that money when I leant it to her. I don’t feel bad for doing that, but I am a little upset that she complains about having no money when they have two good incomes and can go out and do things like this. I wish I had 1/4 of what they had, but I don’t want to be greedy. I feel awful for feeling like that, but I do. I am sad and scared.

I miss my grandma so much, at the holidays especially.

Even given these hurdles, I am extremely grateful for so many things. Family, my amazing kids, Dave, friends, what we do have, my education, my relative health… this list could go on and on. I am, by and large, quite happy with my life. I feel scared often, I feel like a failure, and I feel less than when I am around people who have money. However, I know that this will change someday. I just hope that someday is soon. I feel bad saying that I feel we deserve something good to happen because there are people who are sick, losing children, living in extreme poverty, under oppressive governments, war-torn… in the end, we have it pretty damn good.

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