Posted by: Kate | March 30, 2010

I’m Here, Sort of…

Willem went and bought me this adapter thing that lets me be online despite the absence of WiFi or similar here.  I won’t be able to be on every day, but it’s really good to know I can pop by when I want.  I’ll have an intermittent presence online for a while… like a lot of things, I’m being told to focus on the positive, “Well, it’s better than nothing!” instead of on the frustration of an imperfect system.  But I am here, can check email, can post on the blog and Facebook… so, fine, better than nothing!

Let me sum up with the facts, throw a little opinions and emotions in there, and then see if I can’t sleep a little tonight.  I could have taken sleep medication a few hours ago, but I really hate the kind of sleep that gives me, so I only take it when I know I have something coming up the next day that makes more than a few hours of sleep necessary.  Nothing scheduled tomorrow, so sleep is optional.  And, remembering the radical hysterectomy at 32 nonsense, the worst of the hot flashes happen when I’m sleeping.  Might as well stay awake, sometimes.

I’m now in a rehabilitation facility about three miles from my house.  This is excellent because it’s so much easier to see Willem and my mom (who has dropped everything and moved in to help with the kids and the house and is really, truly being wonderful about it) and the big kids and Gretchen and several other people who live closer to me.  It’s also horrible because they have a strict, firm rule that says no babies – so I can’t see Isaac at all, perhaps until I’m discharged.  I’ve seen him four times, he’s 25 days old.  Each day that ache gets bigger, and sharper.

Physically, I’m healing well.  The size of the wounds is shrinking and while changing the dressing is still unbelievably, wordlessly painful, the process of is also a little quicker each time.  I’m not a big enough girl yet to choose to handle dealing with it alone, but I can imagine the day… or maybe I’ll just be able to find enough people willing to listen to me snivel and moan and writhe, and watch an indisputably unpleasant display of wounds and sponges and tape,  to get through to the end of this.  In theory, the original dressing was put in on March 10 and it should be about a month-long process of magically shrinking  wounds (and, credit where credit is due, they are shrinking), so April 10 would mark the end of that month… my hope muscle has not just atrophied, it has scurried off to places unknown, but that would make for a measurable, finite sort of calendar, while my brain is starting to convince itself that this is all just going to stretch out into infinity.

I’m able to walk well with a walker: confidently, quickly.  I can also walk without one, though I’m a bit slower and still nervous.  That’s much more a mental thing than a physical thing, though.

Fine motor, I can write again.  Early days, it was touch and go, and when I could write it looked like I was using my left hand, when I was not.  I’ve not yet tried knitting  – sort of a mental block there, again, I think – but my stepmother brought me bulky yarn, fat needles and simple patterns.  I have the technology.

To get discharged from this hospital, I need to attack a sort of two-pronged set of priorities.  One has to do with the wound dressing, our friend the VAC, getting it changed regularly.  That’s the nasty, hurty part with no good solution except it is a little smaller and faster each time… it will get better.  I have to keep having wound changes every 3 days for about 2 more weeks, plus or minus.

The other prong has to do with gross motor skills, I have to be able to walk certain distances, lift certain weights (but not TOO big, I did just have multiple major abdominal surgeries) climb a certain number of stairs, etc.  They don’t seem concerned about Occupational Therapy (OT – fine motor skills), I think on the theory that they can do that on an at-home, outpatient basis.  I took four laps around the floor today with Physical Therapy (PT), using the walker only because they wanted me to, so it’s a start.

Emotionally, I’m all over the map.  I started this evening very rough, but time online helped steady me.  Just the routine of it, and the comfort of friends all over the place, and the possibility that someone out there might be listening and might respond… you just help remind me that life does go on and it will be OK again.  So, thanks for that.  I’m struggling mightily with not being able to see my son, that ache just gets bigger and sharper every day.  I have a lot of anger and resentment and why-me and so on, and am using a paper-and-pen journal to work through what I can.  I’ll be getting into therapy, and likely couples counseling given the nature of my surgeries, as soon as possible after I’m out.

And I’m hoping to see a GYN as soon as possible (not one from the group that was treating me, or rather not treating me, before) because instant menopause from the hysterectomy is not helping keep me on an even keel.

So.  In a large nutshell, there I be.  Somehow it got to be 3:00 in the morning, not sure how that happened.  I’ll go see if I can’t shove a little bit of sleep into the evening, in between my angry neighbor’s uncannily regular and superhumanly loud calls for the nurse. (These continue even when the nurse is physically at his bedside.  He is not blind or deaf.  He’s just irate.  And dedicated.)

Emails, PMs, texts, calls, they all work well as ways to reach me… if you’re worried about interrupting something, don’t be, I just don’t answer the phone if I’m busy.  And your communications do matter, they do help, more than I can express.  This whole situation bites.  Loneliness gnaws.

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Responses

  1. Oh, Kate. I wish I could do something to help.

    I wish I could give you a hug.

    Just know that I miss you and that I check Facebook daily for your updates. I’ve stopped saying stuff only because I don’t like sounding like a broken record.

    Still sending you lots of love and healing vibes from over here on the West Coast, woman.

  2. It’s so good to “hear” from you. As far as the “no babies” thing, what about a two-hour pass, to go get a decent lunch and see your baby? There should be no reason not to allow you to at least go out on the grounds and be with your family…your WHOLE family…

    Glad you took down that other post, but equally glad you posted it in the first place. The clinician in me was able to fill in the blanks and figure out what was going on. Ugh.

    As far as the “instant menopause” option (BT,DT, as you know)…PLEASE tell me they’ve started you on bio-identical estradiol? The Vivelle Dot patch is the BEST around, sticks well without breaking out your skin underneath, isn’t metabolized in your liver so small doses work well, and is just all-around wonderful, especially for a young woman. Menopause, as it turns out, doesn’t suck quite as much as I’d thought, although like everything else you’re going through, it will take some time to come out the other side. But seriously, there is NO reason NOT to take estrogen in your situation, and don’t let anyone talk you out of it!

    Hugs and prayers going out to you tonight. I’m off to a very late (or too early) bedtime myself, and YAY! I get to be the first! I know those midnight whim-whams in the hospital all too well, unfortunately.

    Has anyone gotten you a Nintendo DS yet? Mindless games are good for fine motor skills and also for keeping your brain somewhat engaged and occupied away from the pain — there was recently a study done with peds patients that proved that the kids with gaming systems used less pain meds than the kids without. Just a though, but even some easy sudoku, or Mario Brothers, or My Pet Pony or some such might really, really help!

    Love from California!
    ~ Audrey

  3. (Well, OK, so Melanie beat me to it…lol…)

    • Hah! Well, it wasn’t intentional, so I hereby award you Honorary First! Status. 🙂

  4. Ooooh! Audrey, the DS idea is brilliant.

  5. I third the DS idea – something that just lifts you away from the now always helps. Plus you can plug in headphones and get away from others noise and kind of ‘zone out’ a bit.

    Have had you in my thoughts a lot so it is good to read your posts. And I’ll send as many healing vibes as I can summon. My Ma’s church have had prayers for you all at every service – I’ve let them know how you are doing as well.

    I wish I were closer by way over here in a wet and windy UK there are lots of knitty peeps thinking of you.

    Heal fast.

    xxx

  6. What the hell are we all doing up in the middle of the night?

    I had the same idea about some kind of grounds or pass visit. There’s some pretty good thinkin’ goin’ on here!

    Glad to see you posting. And healing.

    Someday we’ll joke about you hitting menopause before me. Just, um, not yet…

    xoxox

  7. Great minds think alike – I immediately thought about a pass to go outside in the Spring air and hold your baby too. Are you allowed outside?

    I have faith that you possess the strength to get through the trauma of the physical wounds and I know that you & Willem have the love, closeness, openness and mutual respect to work out the resulting, ahem, issues and will thrive as a couple.
    It’s missing this time with your precious Isaac that I know has got to be excruciating for you.

    I am guilty of not calling for fear of being a bother at the wrong time (hence, all the texts). Talk to you later today! In the meantime, I hope you got some sleep after writing this! Love you! ❤

  8. love(1000)

  9. I’m so relieved to hear you’re walking, your would is shrinking, and your motor skills are OK. I’m also very sad about you not being able to hold Isaac. I can’t even imagine that — I don’t think anybody who doesn’t have kids can.

    Hang in there, keep healing, you have a lot further to go, but you have come so far already.

  10. It is so good to hear from you. I think about you all the time, just so glad that you are here, and that you WILL get to go home to be with Willem and your babies.

    The DS is a great idea – there are lots of great games out there that don’t require the button-mashing skills of a 10-year-old. I recommend the Cooking Mama games. Ridiculously addictive.

    Much love from Maryland!

  11. Oh Kate. I just don’t have the words anymore to tell you how much I hate this situation. It does bite, that’s for sure. I hope you’re able to find a way to see Isaac soon. It’s just not fair.

  12. The DS is a great idea. I like the crossword puzzle game. I play it in the pick up line at my son’s school. There is a new, larger DSi (the DSi XL) which might be easier for you to hold and the screen is bigger.

    I know it’s hard to not see the baby. My son was in the NICU for 6.5 weeks. I would visit every day, but it was never for long enough. As soon as he came home, I held him constantly and all was well. Hang in there – more prayers for a fast recovery going your way!

  13. I’m glad to see you have the ability to be online and connected. Your other friends all have such great ideas. Me, not so much.

    But I just wanted to say and tell you that I’m thinking of you and praying for your rapid healing. Many hopes you get to see Isaac – soon!!

  14. ((((hugs)))) Kate! I love getting your updates. Calla asks every day for an update on you too. She loved hearing that you walked 4 laps yesterday. You continue to be in our thoughts & prayers.

    I hope that you are able to find a way to see Isaac soon. And hopefully your dedicated roommate will find a way to another room soon.

    Hope to hear more from you soon.

  15. It’s supposed to be gorgeous outside this weekend. I would campaign for a quick pass outside to see Isaac. I’m sure just smelling his baby scent will give you added strength.

    Don’t have much to add to the above comments. just wanted you to know that you’re in my thoughts. Hang in there – it WILL get better. Have faith.

  16. Hugs to you—-that VAC thing sounds terrible although I am so glad it’s going quicker and may someday soon be but a distant memory.

    I love the DS idea or maybe a Kindle if you feel like reading a bit? I suppose now is a good time to think of all the gadgety stuff you might want but normally don’t ask for yourself.

    I can’t help you with the knitting. I am confused by it even on the best of days.

    Hang in there and know there are many of us thinking of you, even if some of us are just catching up!

  17. Oh Kate… You’re doing so well – I’m sure it doesn’t feel like it sometimes, but wow. The sheer volume of vibing going on for you has impressed me so and I’m confident the surge of energy has reached you in many ways – I sure wish I could just give you a big hug.

    Keep on rockin’!

  18. Hey hon…. I cannot imagine your heartache. 😦

    My friends, of whom the husband travels a whole ton for work, have set up videoconferencing so that when he’s on his weeks-long trips, he can see his daughter every evening. It sure ain’t the same as hugging and kissing her… but it’s a big improvement over a complete void.

    Keep on keepin’ on, amazing lady. A lesser person would have completely crumbled. And even though maybe you’ve felt like you would, or that you already had, the fact that you have the gumption and wherewithal to simply write this post last night proves that you haven’t. Just amazing. Love you.

  19. I am new to your blog – found it following a link from “Her Bad Mother”. I can not imagine your pain but there is one thing I know. You need estrogen NOW. I had a complete hysterectomy when I was 38 and stopped sleeping. Period. No sleep, they took out the sleep switch with my ovaries. No sleep = lousy healing abilities, horrific mood swings, night sweats that leave you dehydrated, and hot flashes that have you eying the freezer compartment of your fridge as a potential new home. Please talk to a professional soon about estrogen. We are NOT meant to go through menopause in 12/24 hours. Your body and brain need the hormones.

    May you find healing, strength and peace in the love of your family and friends. You are stronger than you know.

  20. Hi Kate,

    Just a quick hi. I’m glad that you have access, as limited as it may be, to the Internet. I love the DS and Kindle idea. I think one of the biggest dangers now could be isolation and boredom. Anything that keeps you connected to your world and keeps your brain active is a great idea.

  21. Hi Kate,

    I stumbled upon your blog a few days ago (and read all of your old posts). I have so much admiration for your strength. Your ordeal has been just awful, but you’ve made so much forward progress! One day at a time you’re getting there, getting better. Hang in there and stay connected when you can. There are lots of people out here pulling for you.

  22. Glad to see you on 🙂 I really don’t have anything to add, everyone has had such good suggestions and advice, I just wanted to chime in to let you know your family is and has been very much on my mind and I’m still sending positive thoughts and love your way.. I wish I could come sit with you the way you did when I went through my hysterectomy, ah well maybe your family vacation will bring you through Florida 🙂

  23. Kate,

    I am at a loss as to what to say, other than you are in my thoughts and prayers daily. I know from the few times that we met, that you are an incredibly strong and resilient woman. I have complete faith and optimism in you, and you have shown courage in the face of all that has gone on.

    I wish you and your family nothing but the best and hope that you continue to make improvements. I know that Emily, Jacob, Isaac and Willem are incredibly lucky to have you in their lives, as are we all.

    Though I am halfway across the country, if there is anything I could do at all, please let me know. If there’s not, I will continue to send prayers and good thoughts your way.

    May you soon be able to “Knit On, with confidence and hope, through all crises.”

    We all are here and are all pulling for you!

    ~Heather

  24. Just thinking of you.

  25. Kate, I am so glad you are able to be back online. My heart aches for you, I can’t imangine how stressed you must be. Whatever avenues you can find to help you let off steam. Use them. Scream back at the neighbour calling for a nurse if you have too. Otherwise we are here for you vent online we are here and we are concerned and we will always listen. Again I wish we were closer…. HUGS

  26. HI Kate – I was so glad to see you posted today – I check for one everyday – on top of asking Gretchen how you are doing!
    I hope you are out of there and mended really soon – you are such a wonderful person and I am so glad Gretchen has you as a best friend.
    Melissa M.

  27. Sending much love & positive healing energy for you and your family.

  28. For what it’s worth, I’ve got a 84 year old friend who has had a VAC at home for a couple of months- another case of dismissive and stupid doctors. She also gets OT and PT at home. It took a while to find a qualified nurse to come to the house to change the thing but it can be done. It just requires the right people, and the right insurance.

  29. Kate, I’m so glad you are doing better! I know it’s a long road ahead, but you’ve come so far. You are a strong woman!! Think of you often and sending well wishes!

  30. You are in my head and heart all the time Kate. I don’t have your physical email, but you have mine, if you ever want, I am GREAT at long lengthy emails about not much at all, and I can send you pictures of sunsets and flowers and things.

  31. darling look at all the comments you’re getting! Great to see that you’re back in communication and very sad that your little one can’t be with you at the moment, it must be awful but he’s in good hands I’m sure. Things will get better .. be brave, get out in the sunshine and life will get back to normal. Just takes a little time. Big hugz from down under.

  32. Still reading, still thinking of you and praying for you, still can’t believe what has happened. I hope you’re sleeping.

  33. Maybe download some podcasts to your computer while you’re online so you have something to listen to later?

    One of my favorites is Cogknitive by Dr. Gemma. She’s a psychologist and knitter and likes to share strategies for dealing with anxiety and stress. One of the strategies she mentions for dealing with anxiety is motion on both sides of the body…using both hands together to do something. Like…KNITTING! 🙂 Somehow working both hands at the same time has a calming and centering effect on the brain chemicals and emotions.

    I’ll add my voice to crowd telling you to get on the estrogen, too. My SIL had a total hysterectomy in her early 40s; hers was for uterine cancer. She refused estrogen at first because of the news that was out at that time about the cancer connection with estrogen. After a few weeks of total hell (trouble healing from the hyst, bladder problems, hot flashes, no sleep, feeling like she was losing her mind), her doctor convinced her to use an estrogen patch for a while. She was then able to wean her body off of it gradually a few months later.

  34. Oh Kate, I agree…this whole situation bites! My heart aches for you also. I hope you are able to figure out a way to see Isaac soon! Hang in there dear friend! Love you!!!

  35. I love you Kate, and I think about you a lot. Why the hell are you in a room with a man? That is plain wrong. Also, get everyone you know close by to petition the facility to give you an hour pass a day, a week..whatever they will agree to to give you that time with the baby…I know many women go longer without their babes, but my heart is aching for you, so I know you are hurting. I have a Kindle, and I would LOVE to donate it to you…can someone send me your address and phone number? I have a nice selection of books that should help fill in some time. Keep as positive as you can..remember many of us thought we would never see your words again, and it is only a few weeks past then…so please hold on too the good. All my love, Kelly

  36. I repeat what bluecanary said: LOVE(1000)

    It’s very good to hear from you on your blog! I think I mentioned that on fbook already but thought I’d reiterate)

    Healing vibes from the great white north!


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