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.

Yeesh

On the bright side, shots in the back muscles aren't bad at all! Minor, minor pain.

But here are two images of jaws. Take a look at the TM joint and guess which one is mine and which one is off the 'net.

The surgical consultation should be interesting.

Jabber Jaw

It's been over a month since my last post. I've certainly been busy with house stuff, visitors and of course, the ever growing, increasingly mobile baby. She has learned to flip onto her stomach and is not that great at rolling back onto her back. So she gets stuck on her stomach and screams. It's quite tempting to strap her down at nap time and bed time, but I think there are laws against that. The swaddle worked until she figured out how to flip onto her stomach IN THE SWADDLE. Mein Gott, this kid is stubborn and squirmy!

After a whole day (and some times all nights if I'm home alone for a stretch) I find that I have nothing to give outside of caring for the baby. I don't have a lot of energy for much else and that sucks since my dogs are giving me evil looks for not taking them on walks. I would like to try to work up to walking them again for their health and my own. We are all on a diet (save the baby) since we all got a bit pudgy over the winter.

Patton has knee problems (luxating patella) and our vet said surgery would fix it but that is expensive. So he needs to lose a bit of weight and take joint supplements to help keep arthritis at bay. Having reminders that my fur baby is mortal and getting up there in age hurts my heart. I want him here with us forever, as I do all my pets/babies. Horace consulted with a vet on his hips and unfortunately is not a candidate for stem cell therapy. However there are some shots he could take, acupuncture and supplements which may help him. It's weird having to help my dogs with similar problems as my own. I guess I feel their pain, almost literally.

Speaking of, my health shit hasn't abated at all since the baby arrived. It is very hard to deal with it all on top of caring for a demanding little human. Difficult, but not impossible. (I just had to take a break to let my fingers rest from typing.) The latest on my journey through it all has been challenging. First, my biologic medicine isn't working as it had been pre-pregnancy. Apparently post-pregnancy, a woman's body can change the way it responds to medications. I'm anxiously awaiting insurance to approve a switch to a medication injected once a week. Also, the steroids I so wish to stop taking have made me cranky and hungry; an eating machine derailing my goals to drop a few pounds. Yeesh. They want me on it at least until my flares are under control, then I can start weaning. Third, the pain in my jaw and face has been constant for over a year. I was unwilling to get xrays during the pregnancy but finally did at my subsequent cleaning in March. The dentist stated, in his opinion, my jaw is showing significant damage in the joint. He recommends surgery and gave me the number of someone to consult with in Missouri. I made myself an appointment with a dental pain doctor who specializes in facial injections. (Apparently the jaw joint - TM - is so intricate, it is nothing like a regular joint and harder to treat with trigger point injections.) I am hoping, between the both of them, that surgery is the last resort and I can try a myriad of things first. I've read that jaw surgery should be the absolute last resort because so many things can go wrong. If they tell me to have surgery, it must mean the damage is pretty severe. I already avoid things like chewing gum, eating popcorn and other hard foods, and giving blow jobs to 50 guys a day as a source of income. Ha! Just seeing if you are still reading this. :) So lately my life has been baby care, calling doctors, harassing receptionists into providing my records, making appointments and making arrangements for EK while I attend all these appointments, trying to hurry up the insurance process for the new medication, and being very crabby.

All of this gets so old. But I must carry on, as well all do when facing life's challenges. Excuse me, I need to end this post. The squirmy baby is awake and hungry!

Tschus

Baby 101

As stated in the previous blog, Elsa is 4 months old. I have learned so much in four months. The first most important thing is that I don't love being a mom. I love being ELSA'S mom. I love seeing her grow, seeing her smile, try to talk, and discover new things. Being with her in the emergency room when she was 6 weeks old really made me realize how much I love this little human and how I would do anything in my power to keep her safe and happy.

So I've decided to share some things I've learned in these short four months.

Wipes Warmers: I read up on these and always read that they are a waste of money. I disagree. Try having a winter baby and touching her tender bits with a cold wet wipe. Get a baby wipes warmer. They are only like $20-40.

Cloth Diapers: I was given several sets of these to use as burp cloths. They are WONDERFUL. We have them all over the house.

Baby Apps: Baby apps are so helpful those first few months because your pediatrician will ask you how often and how much she eats, how many diapers she fills, how often she poops, etc. If you are like me and you can't remember what you did a day ago, let alone what someone else is doing, these are so helpful. I got the Baby Log on my Ipad and recorded all this info and more for about two months. Now I don't use it very often but for $5, the app was worth it.

Diaper Champ: We got this for about $20 at a garage sale and I'm so glad we did. This thing keeps the smells in check and it uses plain, everyday garbage bags. No expensive refills. Here is one on Amazon.

WD40: Spray all the hinges within ear shot of your baby's room. I can't believe how loud a squeaky door sounded once we got a sleeping baby in the house.

Baby Monitors: I wasn't going to get one of these, and then decided to just get a monitor with sound from Craigslist. My mother in law generously purchased a video monitor for us instead. I'm so glad we have it!! I think this is the model we have. It's expensive but worth it because you can see your kid at night through infrared, although your baby looks like a demon when her eyes are open. If you have health issues like me, running up and down the stairs and trying to sneak into her room when you hear a sound would just suck. This saves me some energy. The only problem is that the battery on the hand held monitor runs out after a couple hours. So you need the charger handy. Also, because our camera is wall mounted, it goes off from external sounds like high winds and storms, loud car engines, etc.

Cleaning Supplies: We keep some diluted bleach and paper towels in her room because this kid can projectile poop. And you really need to disinfect that biohazard! Plus when a dirty diaper smears on the diaper pail, it's easy to clean up with all this right there in her room.

Rectal Thermometers: Sounds horrible for you and your baby but it really is the best way to get an accurate temp when they are infants. I'm so glad we had one otherwise we wouldn't have known she was as sick as she was in January.

Swaddlers: The swaddlers with velcro are awesome when they are little. It really calms Elsa down and helps her sleep. Of course, now she's too strong to stay swaddled!

Mobiles: This mobile has saved us numerous times. It's got a projector on it and you can project onto a little canopy that rotates with some animal figures. Elsa LOVES it. When she's kind of tired but fighting her nap, I turn it on and leave her in the room. She talks to it and watches it until she falls asleep. We got this one at Walmart. Plus it comes with a remote control so you can restart it from the doorway. It has music, a heart beat sound and nature sounds.

Mesh Crib Bumper: The AAP now says not to use any bumpers in cribs but I still use the mesh bumper. It wasn't in place properly one day and Elsa managed to wiggle with her swaddle and get her legs stuck in the crib slats.

That is all I can think of so far. Speaking of the little zombie baby, I can see her wiggling and fussing on the baby monitor. Time to eat! Tschus.

Time flies

It's 28 years today since my mom passed away. I'm doing better than I thought I would. I talked to some family and friends and played with Elsa. It helped that the sun was shining and birds are singing everywhere. I also did a lot of moving things around the house to make room for some family pictures. Now my mom's photograph is in Elsa's room, so Elsa can see her every day. That made me feel really good.

I thought I'd share some photos of her room now that things are moved around a bit. It's such a cozy room now. I just love it.

Here is a photo taken last week by a professional photographer who came to our home. I love this picture so much. She's so cute!!

Here's part of her changing table, complete with two-headed doll and skulls burp cloth.

Old microwave stand which now has the wipes warmer, toys, books, and supplies tucked away.

My mom watching over us.

The bassinet now holds stuffed puppies and kitties.

We do a lot of rocking here.

Some old doilies my mom either made or inherited.

The baby book I'm working on.

We tried to get her hand and foot print. The foot was much easier but she was not so cooperative with the hand.

I like this humidifier because it looks like smoke coming out its ears.

Relaxing in her room on her cute, lil' blanket!

And we took a quick video to share with family and friends. That's about it! It's nice to say that I got through today and that things are good. :)



Tschus!

Coming to terms

Warning: Heavy content below.

Every year about this time, I am reminded of my mother's passing. It's not just dates on the calendar; it's the grey skies, the dead grass and bare trees. For some reason, instead of getting easier, it seems to get harder each year. But in a different way than in the past. I've blogged about her before but I've decided to finally go a step further with my grieving process.

I've made no secret that I see a therapist. I started because chronic illness takes a lot out of me physically and mentally. I needed some coping mechanisms as my old habit of bottling things up and drinking really wasn't working for me. Therapy has progressed to include other things: my first marriage, my mother's death, etc. This year my counselor wants me to write my mother a letter, to let her know how I've felt all these years with her gone and what I wish we could have done had she lived. This is extremely hard for me to do.

For many years I've contemplated sharing some letters that she dictated to us kids while she was in the hospital dying. I've always felt that some things were too personal to share, even for me. However, given the extremely difficult task laid out before me, I think it's time. She didn't write these herself, they were dictated to a friend of the family.

First, a letter for all four of us kids:

"To all my kids:

I want you to know that I never spent much time talking about the spiritual side of life. I never thought about it much, but I know now that there is much more to life than we have been aware of. I want you so much to learn about the spiritual part of your lives. I know that we will all get there in our own way and I know now that this is the most important part of our lives."

I guess this sentiment that she expressed in her final days is what has propelled me to find my own relationship with God.

She also dictated a letter to each of us individually:

"Dear Becky,

I love you with everything that is in me probably especially because I am dying. I want to strengthen that bond with extra love. I think you will hurt a lot, but in the end it will make you strong and my love for you will help you to overcome your grief. I've known this for a few years now that I would have to leave you early so giving you more love has been important. My life was made richer by your ability to openly express love and affection.

Love, Mom"

My mother's friend also wrote her eulogy, of which I have a copy. I haven't scanned this but will transcribe it here:

"Dear Lois,

As I told you on Saturday, when we rode down together in the ambulance, I have grown to be very close to you. I have been very impressed by your regard for other people. It wasn't a blind regard - it was carefully balanced by a sense of justice. I am very much aware that the fullest expression of your regard held a warmth, love and kindliness that touched ones very spirit. This, despite the pain of your illness and the burden of your medication, poured forth to others until the final moments of your existence on this earth and has been felt since your passing into the next world.

Your touch was not restrained; it conveyed a warmth and radiated an energy that also touched ones very being. There is no finer expression of ones spiritual connection with others than this.

Lois, your touch and your regard really drew people together. They were non-possessive and were nurturing. Best of all, on Saturday in the hospital, I saw that they were reflected back to you in the eyes, tears and touch of others.

The finest expression of your qualities, Lois, was shown in your relationship with your children. You allowed them enough space to grow to their fullest as individuals and provided enough limits and guidance so that they could be sure of the direction to grow.

Perhaps Lois, you would want others besides just your children to know what we talked about last - that you have come to believe that there is more to our lives than we know and that it is the spiritual part of our lives that is most important.

Lois, your life especially in your regard for others serves as a fine example to all of us as we strive to find the spiritual realities of our own existences.

You will be warmly held in our memories.

We love you and wish you well in your journey back to God!"

I guess there was standing room only in the church at the funeral. I don't remember this. I just remember wanting to hide in a closet afterwards when so many people were parading through the house with casseroles and desserts. I remember being angry that my mother had just died and people were thinking about food. And when everyone went away and my family was left to deal with it all, we all went our separate ways. Everyone withdrew into themselves, in a haze of grief and anger, and I was on my own to process the events through a seven year old's emotional maturity.

Going through this with Elsa here gives me mixed emotions. I look at her and see so much joy. She really does keep me going in times like these. And I also see in her face the features of my mother that I inherited: her chin, her lips. And I just wish so badly that she was here. I wish I could call her up and say, "Help me get this child to sleep! What should I do?" Or, "You'll never believe what Elsa did today, it was so amazing." But I can't do that and it hurts so much. For now I can only talk to her in my prayers and in my dreams.

So if you've read this far, I thank you once again. I have been on this road for going on twenty eight years. I hope that, finally, I am able to move to a point where I can think of her without such a profound sense of sadness.

Until next time....tschus.

Updates and Goals!

Sorry to have lapsed on the blog for so long. The baby is keeping me so busy! Each day is a blur of bottles, diapers, tears and naps. Poor EK had to be hospitalized already but she is ok now. There have been many trials by fire and I'm scrambling every day to keep on top of things.

But it's finally getting better. I can read her cries now and I know when she's pissed, tired, hungry, happy, etc. I am so thankful that I can stay home with her because I have more opportunities to watch her grow and get to know her. She sleeps through the night most of the time so we do get good sleep now. I get up with her around 4AM or so, she eats, we "party" and then she goes back to sleep. And so do I. (Parties consist of the baby waving and kicking her arms while she coos and tries to talk. I let her go until she starts to seem cranky and then it's back to the swaddle!)

I highly recommend investing in a video baby monitor if you are planning on kids some day. It has been a life saver. I can hear her when she makes noise, it alerts me to cries and at any time I can look at the screen and see her. It has night vision too. Some times she fusses but doesn't fully wake up and will go back to sleep. If I had the regular monitor, I'd be running in there with every noise. But this way I can see that she's ok and give her time to fall back asleep on her own.

So other than taking care of the little monster, I have been trying to work out and keep the house up. I will soon start a new work out system that lasts for 90 days. I know some people dislike Jillian Michaels but her workouts are the only ones that I enjoy doing and they motivate me. I also see great results for toning my muscles. I have nicer arms now after just a couple weeks. So this new workout is her Body Revolution. It seems very similar to P90X. It's going to be BRUTAL. I'll do the modified versions of the exercises to spare my joints but I intend to do the workouts as listed. And I will try her diet too. I want to lose inches and get back into my nice clothes!

Wish me luck! This blog may include some of trials and tribulations of the workout. I'll take before and after pics too. My husband wants to restart P90X so we are going to start at the same time and see who loses more. It's kind of a competition between us and will motivate both of us to get fit again. We're both really excited to go! So as soon as it comes in the mail, IT'S ON.

So here is EK, modeling some new bibs. Wish me luck on getting through this 90 day workout hell!

Tschus.