Pretty and sick

Once in a while, my tired, Mommy/fibro brain allows a shaft of light inside my head long enough for me to form a few coherent and relevant thoughts. Spell-check helps too. I just read this article about feeling beautiful when you live with an autoimmune disease. Personally I have gone many days without a shower, without brushing my hair, without dressing in proper clothes, let alone not leaving the house. It's hard to have the energy to care about your looks. So I appreciated this article on that level alone.

But then I read through the comments and was surprised to see how many people bitched and griped, saying the article is superficial. Simply putting on lipstick doesn't transform your whole outlook or how you physically feel. Putting on a cute outfit doesn't mean diddly shit when you can't get out of bed, or take a shower, as I find myself going without on many occasions. I get that, I do. I go through waves of anger, acceptance, sloth and defiance. But I have to say that on days when I can't primp myself a little, putting on a little of my favorite perfume makes a difference in how I feel about myself in that moment. It's not perfect, but sometimes it's enough.

However, I do agree a lot of these articles make it sound like the deep psychological issues that accompany physical pain and limitations are easy to fix with just a quick swipe of lipstick or a snazzy sweater. Patients like us aren't looking to be coddled or pitied, but we don't want to be condescended either. Shit happens. My new normal is to always have pain or discomfort on any given day. Hell, I feel like shit at least a little bit all the time, so I didn't even realize I was running a fever from an infection this week. I just figured it was the changes from the rainy weather that so often wreak havoc on joints and sinuses. That's life. We either learn to make the efforts to look nice or we accept that yoga pants and tshirts are good enough for the day. Do your best, that's all you can do.

Tschus.

Week 4, Day 2 and 3

On Day 2 I felt like Superwoman. I was doing this and I was doing that, and then I did some more. I felt like I didn't have any illnesses and I was a normal, healthy person again! Until late afternoon. The aches and pains hit me pretty hard and I walked around like the living dead, doped on pain killers and muscle relaxers, cooking dinner for Elsa and playing with her. Luckily I got to talk to my mother in law for an hour which helped to wake me up. We always commiserate together and she's a great source of support for me. What a wonderful woman!

The menu on Day 2 felt less filling to me than Day 1. I think the diet switches things up so much so your body doesn't get used to getting the same kinds of foods every day. And let me tell you, you are not eating exotic foods. I'm talking oatmeal, fruit, vegetables, lean protein. You can drink protein shakes and I buy the generic ones from Target, Special K or the ones from Unikey Health, which are my favorite.

So if you are reading this and wondering if you can do this program, the answer is YES. You can preorder the book and it's under $20. Seriously, get on it!

I hate feeling like this but it could be worse. I just got to make sure I rest today and hopefully tomorrow I will feel better. I'm just going to go ahead and include today, Day 3, since I know I will just be following the diet, trying to drink lots of water and sitting my ass on the chair. Here's to hoping Day 4 is more exciting! Tschus!

Finding that "happy place"

I can't believe we're half way through June. Every day is another adventure! My wee one is crawling, saying Momma and Da Da, got her first tooth and can pull herself into a standing position, if very motivated. Time goes so quickly.

The organic experiment in the house is going well. I find myself trying new recipes to use up the produce before it spoils. Today I had regular blueberries and organic strawberries to use up so I tried this recipe for Blueberry and Strawberry Buttermilk Cake. I wish I had read through the comments because I made one mistake. I should have cut up the fruit into smaller pieces. Too much fruit, or too large of pieces, make it harder for the cake portion to bake through properly and evenly. Therefore mine is a little overdone because the toothpick kept coming up with batter. Despite being overcooked, it really is a light-tasting cake and the flavor of the berries is just right. I would have taken a picture but mine sure doesn't look like the one on the website! Now I still need to use up some small potatoes, carrots and radishes. That should be easy.

I will not lie. The last few weeks has not been my best. I think I let the stress of going from doctor to doctor to doctor, never getting any time out for myself and have some fun, really get to me. I remember a time when, although stressed, I wasn't out to try and be someone I am not. I think in the last twelve months I've been trying to be what I think others expect of me. I quit stitching things that make me happy and was trying to figure out what super artsy thing I should be doing. I stopped listening to my voice and listened to all the others telling me to behave this way, do this, react that way instead, etc. Once I stopped listening, once all the opinions and influences were shut out of my head, I realized that no matter which way I go, all roads end up at the same place.

I can't go on like this, going to four or five appointments every week. I'm letting all this take over my life and it sucks. So! Hopefully I'm at the maintenance level now and I can just go a couple times a month from now on. Even better if I can get off some medications too down the road. Almost two months of 3-5 appointments a week is shitty. Maybe it's time to revisit acupuncture.

Even though I probably burned some bridges, I am feeling more peaceful. I feel like I've finally accepted that these conditions aren't going away. Having these issues is not extraordinary; it's normal. This is my new normal and some days will be worse or better than others. But there is no need to dwell on something that is an every day thing now, right? And I don't need to convince anyone that I hurt, or I'm exhausted. If they don't believe me, that's their problem. I don't have to like my situation either, and it's only a small piece of the greater picture. I have more good things in my life than bad.

That brings me to the HAPPY PLACE. To get back to my happy place (not to be confused with a happy ending) I made a list of things I would like to stitch and I spent two, painstaking days working out all the details of the first pattern. My spouse and I have a new blog in the works and I'm re-watching all the Harry Potter movies. Right now I'm laying on the floor (because I feel like shit) with my beautiful, silly and smart baby girl while we (I) watch Harry Potter. Such simple things, and yet it took me so long to get back to the basics.

I have to go now. EK and I have more Harry Potter to watch. More like I am trying to watch the movie while she tries to eat my hat. Have a good day. Tschus.

Monday Mourning

Well, the title of the blog is not quite accurate because today is a holiday. So thank you to all the veterans out there and I paused today to remember those who never came home.

If you ever go to Kansas City, I recommend visiting the National World War I museum, located under the Liberty Memorial.  This memorial was erected after the community raised over $2.5 million in only ten days.  It commemorates the first World War but is often the site of remembrance for all wars.  The museum portion is one of the best museums I have visited to date. Check it out here.

For a few weeks I've been pondering over this blog. It started as a space to clean my brain of thoughts, to vent, and to find humor in difficult situations. As with everything in life, it is ever evolving. Maybe it's time this space had more organization and more of a purpose. I am the type of person who doesn't pick one thing and master it. I pick several things and do well in each, but never master any of them. I enjoy target shooting, baking/cooking, spending time with the baby, playing with my dogs, etc. Therefore I am going to have categories for each day, except Sunday. That's my day off. And if/when life gets too crazy and I can't blog, I will just skip those days. Since this IS the Blog of Arrrrghhhh, it wouldn't be the same if I cut out any and all rants! Monday is the day for that. Even housewives hate Mondays, save days like today, which are holidays.

I actually don't have much to vent today. The baby is teething and scooting/crawling everywhere so my free time is very limited now. The teething makes her cranky and the scooting ensures that anything and everything she finds is a potential hazard. I will bitch about the weather because it is like walking into a sauna out there. It doesn't matter the temperature because no matter what, if you spend even a few minutes outside, sweat starts to drip off your face. The lows at night are in the 70s too. Ick.

Health-wise, I'm ok. The docs kicked up my muscle relaxer and the side effects seem to be racing heart, concentration problems, and drowsiness. These are times when I need to evaluate the side effects versus the benefits. I am a bit concerned about my resting heart rate so I will bring that up at the next appointment. I'm having an MRI soon and that kind of blows. I hope it helps in the long run.

My view on life is just like all my stitching projects: it's a work in progress, all the time. I make mistakes, tear out the stitches and start over again. I just need to pause more often to straighten out the threads, tighten my stitches and check over my work. And to also appreciate more the work I've done so far.

This photo was posted with its story on my other blog but I will just throw one photo of it here. This says to me that life is fun and beautiful but sometimes there is shit. And that is ok.

Isolation

First, some wonderful news. No surgery! Two experts strongly disagree with the diagnosis of severe joint damage. Therefore I will go forward with muscle and joint injections to relieve the pain and possibly a splint to wear at night. I'm very grateful I do not have to undergo such an invasive and risky surgery.

So overall life is good. I am working every day to control pain and take care of the baby. Unfortunately I get tunnel vision easily when it's "just do what I need to do in order to get through the day." The days easily blur together and I forget to notice what's going on around me. I've noticed lately that I've hardly talked to a soul other than my husband and doctors. Where did my social life go? It's not that I had a very active social life but I did talk to people in the neighborhood and occasionally hop on the phone to chat with people. My husband travels a lot and I now go long stretches without seeing or talking to anyone unless I have a medical appointment. It creeps up on me and before long I am overcome with intense feelings of isolation and disconnection from others.

Before the baby, I was able to maintain my focus long enough to work on stitching, taking pictures or watching a movie. Now it's very hard for me to do any of this. At the store today I had to look at my list over six times to remember the two things I needed to buy. That is extremely frustrating to me because I haven't always been like this. It's hard to adjust to a new reality when you lived your life with intelligence, drive, energy, talent.

I feel like any time I express an honest emotion in response to "how are you?" it makes people very uncomfortable. It's hard to see the pity in their eyes or the abrupt change of subject. On the other hand, pretending everything is ok (as I like to call it, life is all sunshine, rainbows and unicorns!) feels like I'm being fake. People may see me as thinking negative about things. Sometimes I am guilty of seeing the worst in my situations. However, no one knows what it's like to have someone cut you off in mid-sentence to say something like "but you ARE ok, look at all the x, y, z in your life! Concentrate on that!" When someone does this to you, you shut down. You realize that you can't confide in this person, that you can't express an honest emotion because it makes him/her uncomfortable, therefore you quit trying. Since you can't be this happy go-lucky person that you think everyone wants you to be, and because you are clearly bumming people out, you quit talking to just about everyone in your life. Granted, no one wants to talk to someone who is a perpetual Eeyore, always complaining and never trying to better his/her life.

This article really nails it on the head:

"Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.

The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the "miracle" of modern medicine, and somehow the lack of recovery is often perceived as the patient's fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners and caretakers, an attitude typified by the too-frequently heard statement, "Stop complaining. You simply must adjust." Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself...All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target...Sometimes, it is useful in social situations to present yourself as a Pollyanna. When meeting new people and situations, it may be an advantage for you to let others think you have mastered your disease. The anxiety of other people is reduced by not having to confront illness. The danger is that this Pollyanna image may create a barrier between you and the people who can offer real help.

The resignation viewpoint holds little hope; the Pollyanna viewpoint holds little reality."

This article is so interesting to me and I wonder if part of why I'm stuck in this cycle of isolation and sadness is because I've never found a truly understanding and supportive network. My husband has been wonderful and a few friends are really good people. But they don't understand things from my perspective. And my family is another story. Recently I saw my father and he asked me if the doctors ever really figured out what is wrong with me. I was stunned by his question. I was diagnosed THREE years ago. I shared with my family THREE years ago my new reality. However no one in my immediate family has ever talked to me about it. I feel like they all view me as a hypochondriac. Indeed, I myself thought I must be crazy and it was all in my head, although blood tests continued to prove otherwise. (My brother is also suffering from very real and serious health issues. However the reality of his condition is always glossed over in conversations between he and I. I know part of it is that he doesn't want to talk about it or worry me.) Perhaps it's the mindset of "if we don't talk about it, it's not really happening."

I think the more you try to act normal, the worse you feel. But this article is resonating with me and gives me hope. Just to know that others have experienced all these emotions I feel is empowering. And it makes me think that I need to connect more with my brother. He is the only one capable of understanding my point of view and I feel like we should lean on each other more. Time goes by so quickly and before we know it, we won't have much time left together.

I really do not expect anyone to read this which is ok. It's long and a bit discombobulated. However it was an eye opener for me and I wanted to share it, in the small chance that someone else out there can relate or needs help. Have a good night.

Al and Jane say it best

"In life you have to do a lot of things you don't fucking want to do. Many times, that's what the fuck life is... one vile fucking task after another." -Al Swearengen, Deadwood.

Life isn't always this dramatic or shitty but it certainly can be a challenge. I've been dealing with depression all of my life. I can remember it being bad as far back as 5th grade, when I was a super dorky outcast in my school who had no friends. I even wrote in my diary about how I wished I was dead. Not very chipper! Every time I've tried counseling, I have always quit when it became too painful.

Things changed with my various conditions and issues. Anxiety is now a part of this whole vicious circle. When the pain gets bad, I get anxious because I can't do things like work, clean house, take the dogs for a walk, etc. Then I get depressed, the pain gets worse and things just go from there. I started to really feel out of control when I found out about the pregnancy. All the doubts I've had about myself are amplified now that I know a little human is going to rely on me for everything. Talk about pressure!

I saw a new counselor today who specializes in chronic illnesses. She told me that there are upsides to being chronically ill. I just stared at her and though, ok I'll bite. So I asked her what could possibly be good about it?? She told me that people who face chronic pain and sickness often have more wisdom and patience than those who are healthy. She said we have a different perspective that can be helpful sometimes. I didn't get to discuss this at length with her, as we had a lot to talk about. But perhaps she is right. Maybe we stop and smell the roses a little more than other people? And maybe we appreciate those little things more, like a sunny day, a walk around the neighborhood, a successful outing with friends. I can see how I have more patience now then I did when I was younger and healthier. Now when things turn out less than perfect, I don't get as upset as much or as quickly as I used to. So what? Things have been worse. And probably will be again. No sweat! And sometimes I sit and listen to people's problems and I can instantly see how they are being too hard on themselves. We are indeed, our own worst critics.

I guess I've never looked at things this way before. That doesn't make the frustration, anger and sadness go away instantly. But it helps a little.

There are other things I need to work through but the immediate need is to find ways not to let depression and anxiety take over when my pain flares up. It's so hard because before the pregnancy, it was a cycle of horrible endometrial pain, followed by a fibromyalgia flare and the aches and pains of arthritis thrown into the mix. By the time the cycle had finished, my period would start again. It is hard even for someone who isn't a pessimist like myself to look on the bright side during all that. And I'd get so tired of people saying that even though I feel horrible, at least I look good! Oh yes, because that's all that matters to me. That I look pretty some times. Jeezus.

People who know me in person know that I am no hippy. I don't care for herbal medicine, mainly because I've tried so many things and made myself sicker in the process. However I am pretty excited that this counselor is going to teach me relaxation techniques. When you are experiencing tremendous pain, your body tends to tighten up everywhere. Pretty soon you notice that while the pain started in your gut, for example, it is now radiating all over your back and neck. I'm hoping that this will prevent the spread of pain from tension and stress.

So here I go, back on the emotional roller coaster. Instead of gritting my jaw and pushing down all those fears and anxieties, I'm back to facing them head on. Who knows how long this will take but I'll be damned if I let this shit threaten my relationships anymore. Especially little EK who needs me to be as healthy as I can be, mentally and physically. I want to be ok with the fact that some days I have to be loaded up on pain killers, resting on the couch and letting my kid watch a cartoon, no matter what the American Academy of Pediatrics says right now. Maybe it's just retraining myself to let go of the desire to be a perfectionist in many areas of my life.

I'll just end this now with another quote from one of my other favorite characters from the show Deadwood. Have a great evening, tschus.

"Them what gets cured by Calamity Jane STAYS fuckin' cured."