Post TM Present

Ultrasound pics...

2010-01-15T16:58:00.003+01:00

...of the miracle can now be found on my Swedish blog Making lemonade. Everything looked completely normal and it was so much fun to see the little miracle move around in there. I can now also feel it moving. :) I'm now at week 19 + 2 so almost at half time.

Quick update

2009-11-18T14:07:00.003+01:00

I currently don't write much on this blog. Instead I use my Swedish blog Making lemonade. If you use Google translate you can get most of what's going on even though it doesn't work perfectly.

A lot of things have happened since the last post here. The big thing is that I am pregnant - currently 10 weeks and 5 days. I have also had the flu shot so I don't have to worry about that anymore. I have seen a specialist in maternity care and we seem to agree that a c-section is the best way for me to deliver the baby so that's a huge weight off my chest. I will attend both regular maternity care and specialist care. Because of my problems with the venous blood flow in my right leg (due to that leg being partly paralyzed) I may need to take anti coagulating shots during and after pregnancy but they haven't decided on that yet. The specialist also said it should be ok for me to nurse despite the medicines I am on.

I'm also doing cognitive behavioral therapy this fall and there's plenty there for me to work with. :P

So there you have it - a quick update. :)

Frustrating news

2009-08-22T14:42:00.003+02:00

So we've wanted to become parents for years. But we've waited because of my health issues. We were really close to being able to start trying to conceive now, but then this flu thing happened. I have now consulted with my old neurologist and his suggestion is that I get vaccinated and then wait a couple of months before trying to conceive. This means we'll have to wait at least till the beginning of next year. I think the whole vaccination business is a bit scary since I have had an autoimmune reaction before (the paralysis condition) but then again I reacted to a virus and not a vaccine that time. This time they are considering pregnant women a risk group and will start by vaccinating this group. My neurologist however was of the very strong opinion that pregnant women should not be vaccinated during the first 24 weeks. He is an expert on the neurological development of children so I will go with his advice. But it's sure frustrating to have to wait - AGAIN.

Not in the best of moods today

2009-08-18T17:45:00.003+02:00

My body is acting up. Some bladder emptying issues and other problems. It's happened before and it usually goes away after a few days but it is still annoying. I will probably call and talk to a OB/GYN nurse to get some advice and see if they think I should have a checkup. I have some stuff I want to discuss with them anyway so it might be a good idea. We'll see. I tend to not be able to focus very well on other things requiring my attention when my body acts up so I think it's best to deal with it and get it out of the way so that I don't have to be preoccupied with it.

I plan to spend this evening cuddled up on the sofa with my hubby eating something delicious (haven't decided what yet) and watching tv. I don't watch that much tv but Tuesdays are good tv days, currently with both English crime series (Foyle's war), "Anne of Greengables" and "So you think you can dance".

I hope the physical issues clear up really soon so I feel better both physically and mentally/emotionally. That's part of my prayers for today.

Long weekend :)

2009-07-23T12:49:00.003+02:00

We're going home to my parents this evening and staying there until Sunday. A little break. :) Then I hope I'll have energy for a week of work. Hope you'll have a great weekend. (Stacey - hope you'll have a good start to your work week.;))

Something that came to me

2009-07-14T16:59:00.002+02:00

A phrase or concept came to me the other day: "If you want more, then use what you have." I have no idea where it came from, it just popped up in my head and I think it's true. If we don't use what we have already why would we get more? We might just end up wanting more and more but never using anything. All things aren't black and white and sometimes we may very well need more to get the strength or see the possibilities of doing something with what we have, but many times I think we're making excuses and just waiting for things to get perfect before we do anything. It's all or nothing. I have a lot of excuses myself, and some of them are valid, but they're excuses all the same and the frame of mind I am in when I make excuses rarely seems very constructive. So I'm working on it (or perhaps more accurately trying to learn to let God work on it i me).

A miracle :)

2009-07-13T19:13:00.004+02:00

I believe the Lord has performed a miracle in my life. I bet you get curious but I feel this is something I want to take to my heart and really feel confident in before I share it with anyone. :) But I still felt I wanted to share this much with you. I'm an analytical and skeptical person (too much for my own good sometimes) so this is a big thing for me. I've felt changes within me many times before, but nothing this big. This is special.

Praise the Lord!

Seeing the truth

2009-07-09T19:54:00.008+02:00

As you probably know I have struggled with health issues in my life and the last few years have been tough on me emotionally and psychologically. And now that I am a lot better I find it so hard to let go of my fears - fears that I have developed from having one bad thing after another happening to me. I find myself being afraid of dreaming, afraid of believing that things will be different now.

I have suffered from performance anxiety at least since my early teen years and though I have been aware of that I haven't quite been able to stop beating myself up and talking down to myself in my mind. Now that I have struggled with my health and fallen behind in my PhD studies I keep feeling like I don't belong there, like I'm not got enough. But that's a lie. I got accepted to the program. I have a MSc degree. Of course I am good enough. Any thought saying I'm not is just a lie from the devil. I'm not sure that I will continue working in this field but if I decide to do something else it should be based on God's leading me and not on evil lies. And I also have to remember that whatever I do all I can do is give it my best - the results are then up to God.

I also struggle with being lazy. There - I said it. I am lazy. I shouldn't be too hard on myself given what I've been through. But I have always been a bit lazy. Growing up I was super disciplined and got all my homework done efficiently as if I had been in the military or something like that. Not the most wholesome way to do it. At the university my performance anxiety got the better of me and I became very undisciplined. It's hard to find the balance there. Especially now that I've had these health issues I find it hard to know how much I can and should push myself. I don't want to risk my health - it's taken so much time and energy and work to get this far and feel as good as I do now - but I don't want to use my previous health issues as an excuse to be lazy and not doing my best either.

I heard someone talking about how he became free from his anxiety problems by exchanging every negative thought he had for 4 years with a Bible verse. I thought that was a good idea. I thought I'd look up some verses that address the particular negative thoughts I tend to have so that I can meet them with a word from God. :)

I find myself struggling sometimes with trusting God. I think this is pretty common for people in my situation, i.e. for example people struggling with health issues asking for healing but not getting it or praying for healing for others but not getting it (here on earth that is). It is at those times the dark shadows creep in and try to whisper bad things questioning God's love for us. I find at those times (and at any times really) all I can do is to keep talking to God, completely immersing myself in his Word and feeding myself with sermons, books et.c. from firm believers who are strongly rooted in God's love.

I have clearly felt God leading me and being by my side the last few years. Yes I want MORE, but I have to trust that God knows what He is doing. I feel my dreams are about to come true. I have felt some of His words jump out of the Bible pages like beautiful promises. That brings me comfort in my impatience, the comfort I so deeply need. I hope to be sharing with you one day soon what these dreams I have are and to be able to tell you that they are coming true.

Link to some wedding photos

2009-06-30T13:16:00.002+02:00

Our photographer has posted a few of our wedding photos in her gallery: photographer Angelica Klang. Click, find us and enjoy! ;)

Hmm, paaaiiiin... And some good stuff.

2009-06-27T19:59:00.007+02:00

We have wonderful and really hot summer weather and I decided to go out to work to do some article sorting. I took the bike. I haven't tried it for ages and wanted to see. But it was a bad idea. Sure riding the bike was not too bad and it was lovely being out and getting some exercise and taking in all the sweet flower scents. But it did unfortunately result in an increase in my nerve pain level. (For those of you who don't know, I have nerve pain in the urogenital area probably as a result of the nerve damage I got from the paralysis condition I had as a child. Hence the problems with bike riding...) I felt I wanted to try at least but I think I will leave it. It isn't worth it. It's important for me that the pain level and irritation stay as low as possible since I do the ISC (i.e. catheterisation) now. So I hope the pain level will go down fast and stay low so that the ISC continues to go smoothly.

I need to get in shape but it's soo hard! Cycling seems to be out of the question. And running doesn't work and lately I've had problems with my foot just from taking a medium long walk. It's so frustrating. I don't know what to do really to get exercise without my body protesting...

Some nice things now. We picked up the professional wedding photos yesterday and have a CD with pics to go through before we decide on which photos to magnify and put on display here at home and which to give to our family. I will post some of the photos when we've gone through them. When we got married we also got a gift certificate from church for a family Bible and we went to get it yesterday. But since we thought a huge family Bible is not very practical but more like a decoration piece we instead went for a "slimline Bible" which is the Bible in a format that is easy to take with you wherever you go - only about 2/3 inches thick. The guy in the store then told us that the gift certificate was actually for up to SEK 800, and that we were welcome to pick other things from the store up to that amount. So we went for a bible bag and the "Fireproof" dvd which I have been meaning to get anyway. So it was really great: 3 more meaningful wedding gifts.

Some pics from our wedding this weekend :)

2009-06-15T17:03:00.000+02:00

The professional photos will take a week or so.

Just two days to go...

2009-06-11T10:14:00.003+02:00

Well I am certainly busy these days and I still have a few things to do before our big day on Saturday. I've also had a headache on and off for more than a week and I pray it will not turn into a migraine. Go away stupid ache! :P I want to be able to attend my own wedding and enjoy it too.

The weather for Saturday seems a little unreliable, but it doesn't matter that much since we have both the wedding ceremony and the dinner in the same building. But it would be nice if we could take our wedding photos outdoors of course.

It will feel good but weird after the wedding. But I have many things waiting for my attention so I guess filling the days will not be hard even when we don't have the wedding stuff to think about anymore.

It feels so good to finally have this wedding! We've wanted to do it for years but because of my health issues we have waited to be able to do it the way we wanted to and now it's finally time. Yaaayyyy! :)

A quick tip to get more of God's Word in your everyday life

2009-05-31T13:18:00.002+02:00

I try to make it a priority to read the Bible every day, either directly or through a devotional. But sometimes everyday life is so filled with responsibilities and things you need to get done that it can be hard to devote as much time as you would like to God's word.

One thing I like to do is look up other churches (than the one I go to) that put their sermons online. Then I can listen to a sermon on the computer while doing housework (as long as it's not too load, like vacuuming of course). I find that very relaxing. Listening, getting something good to meditate over while at the same time making myself useful around the house.

Another good way to relax AND get more of God's word is to listen to good worship music. Try starting your day with that rather than listening to the news or having breakfast in front of the tv as many people do (and which I admit I tend to do when I have breakfast alone).

Making every grain of joy count

2009-05-30T18:05:00.004+02:00

Just a quick thought... I have challenges in my daily life mainly regarding my health and I would be lying if I said I didn't want to have perfect health. I can pray for health but I don't want to focus too much on it or spend my entire life waiting for things to get better or worrying. I don't want another health issue or bad problem at all in life! But worrying doesn't help.

I realized the other day that my challenges keep me in a close relationship with God. Sure I have struggled a lot with trust. It's been hard to trust God when so many bad things have happened to me and with all things that are unfair in this world. However I am starting to come to terms with that and seeing God's love for me and realizing that God doesn't cause any of my pain. He only wants to help. If I had been completely healthy and happy my entire life, how close a relationship would I have had with God? Would I have gone lukewarm without even noticing since I would have had all things you could ask for in this world?

I read about a woman the other day, who became almost completely blind at age 15. She heard the Lord speaking to her, giving her the mission to LIVE AS IF SHE COULD SEE. She did. She also said that the Lord has told her that He can make something good from every single thing that she refuses to get bitter about. That really touched me deeply. I believe there is profound truth in that. I struggle and I will fall many times but that is really something I want to live by. Refusing to get bitter. Trusting the Lord completely. Not being constantly preoccupied with my problems but only giving them the attention that is needed in a constructive way and then spend the rest of my time doing what I am supposed to do, receiving each day, hour, minute - every moment - from the hand of the Lord, living the life He wants me to live.

Wrapping up with Matthew 6:25-34:

25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life[b]?

28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Long time no blogging

2009-05-28T15:13:00.004+02:00

Well, time flies. It seems as if just recently there were months and months until our wedding and now it's only 2.5 weeks away! I can't wait but at the same time I'm a little stressed out about the final touches and some important paperwork that we need to take care of.

I also had some health issues in the middle of all this. I've been on a mild antianxiety drug since my surgery last fall when I had a very sensitive stomach made worse by stress. Since we want to start a family pretty soon after the wedding, God willing, and this drug is not considered risk free during pregnancy my doctor and I decided I should try to go off it. I was hesitant since we have so much to think about right now, but I agreed do try. Bad idea! It went really well for a week or so but then I pretty much crashed into anxiety attacks and feeling nervous not being able to take deep breaths, and I actually ended up with a higher dose of the drug. We have now decided to let it be until after the wedding and then we're going to try switching both the anti anxiety drug and the proton pump inhibitor I take for my sensitive stomach to drugs that are considered safe during pregnancy. I will probably also do some cognitive behavior therapy starting late this summer. This problem has been building up for such a long time with all the health issues I have had and I need to deal with it.

I also need to wrap up my PhD studies before next spring so there are lots of things going on. I will pray and look for God to guide us on when a baby might fit into all this. I have been recommended by doctors not to wait longer than necessary with kids because of all the stuff my body's been through over the years. At the same time, I need to be in a good place mentally and emotionally too, so we'll see if and when it happens. We try so hard to plan everything, but the truth is we really can't plan anywhere near as much as we think we can. I have been a controll freak all my life and I am trying to learn step by step to trust God and let Him do the planning for me. :) To just BE in the present instead of wrecking my brain trying to figure out what to do in the future regarding work, family and all kinds of other practical things as well as trying to figure out my "purpose". Well I'm trying to just BE here now and let God lead me step by step.

I encourage you to pray for us, for health for us and our family and that all the remaining preparations for the wedding will run smoothly. :)

I will wrap up this blog post with Psalm 23:

"The LORD is my shepherd;
I shall not want.
2 He makes me to lie down in green pastures;
He leads me beside the still waters.
3 He restores my soul;
He leads me in the paths of righteousness
For His name’s sake.

4 Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

5 You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
6 Surely goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the LORD
Forever."

Wonderful song and wonderful interpretation :)

2009-03-01T22:40:00.001+01:00

Fun stuff! :)

2009-01-23T14:30:00.002+01:00

I've joined a gospel choir and this weekend we're having a gospel weekend. We're going to learn new songs all day tomorrow and perform them at a concert tomorrow evening and also on the service on Sunday. I had a migraine the day before yesterday and I've had some symptoms yesterday and a tiny bit today too, so right now I just hope I'll be able to participate this weekend. Hope I'll get enough sleep too. Singing is so much fun and I am so glad I finally joined the choir.

More fun stuff: the wedding planning is now starting for real. Iiiih... So much to think about, though we're going to have a rather small wedding. Here's a list with things to do:

* Guest list
* Catering + menu + cake (at least we know which caterer to book :))
* Church + place for dinner
* Minister
* Musician
* Music
* Singer (my sister for example :))

* Paperwork

* Dress (I have found one I like, but I have to order it and try it on before deciding)
* Shoes
* Ring
* Flowers
* Hairdresser
* Make up (either my sister or my friend I think)
* Photographer

* Invitations
* Program + menu

Puuuuh, did I forget anything? :)

Lots going on in my mind...

2009-01-16T16:56:00.007+01:00

Next week I will go back to working at the university campus. So far since my IBS got bad I have almost only worked from home. But now I am going back. I think it will do me good to have stricter routines and being in my office out on campus means far less distraction from work than sitting at home...

I am trying to figure out what I want to do with my life in the future. I have put so much energy into my education and in a way it would feel weird to just "throw it all away" and do something else. I've learned the last few years that I can't plan everything. Life just happens to you. This is my job up until I finish my PhD so obviously I need to do my best during this time. But if I am to continue within this field I need to really put a lot of energy into it because there is so much I have forgotten. I feel quite rusty... But right now I am not sure this is what I am supposed to do. I feel the work effort I need to put into it doesn't match the reward. And it's been like that for a long time. And yet on some level I love it and think I might miss it if I gave it up. I have always suffered from performance anxiety as soon as the level of a challenge was higher than what I felt comfortable with. So maybe it's just performance anxiety that's causing me to feel this way. Maybe that's what I feel like running from and maybe I would feel this way no matter what I did so that it's not so much what I do as the having to perform that bothers me... In my case there's also my health to consider. The work I have is perfect for me in some ways, but quite demanding in other ways. I won't be able to take just any job offered to me and I don't think just anyone would hire me given the circumstances. I am quite strong but all that's happened in my life the last few years has taken a lot of energy and I don't think I'd do well at all with too much overtime or stress.

The last few years I have really wanted to start a family. To me that feels much more important than what occupation I have. But starting a family, something that a lot of people take for granted, is not exactly uncomplicated for me. It's the usual risk vs. reward gambling... I want kids, but I also want to be able to take good care of them and after all I have been through I don't want to risk the health I do have. And then there's practical matters like being able to come off the medication I am currently on before trying to conceive. But how I do want kids...

I need to just try to relax and take it one day at a time, learning to truly trust the Lord and His guidance. I do feel sometimes that our generation has been tricked. Freedom is great and I think it's good that there is now a choice for women too, in terms of education and work. I don't want to change that. But at the same time our society has changed so that it is now necessary for both women and men, or both husband and wife, to have a full time job and even then there can be financial problems and worries. So now we have jobs to do outside of our home but we still need to do all the domestic stuff. I wish that society would work in such a way that it would be possible for those who wanted to to have one person in the household working and one taking care of the kids. Unfortunately though it doesn't work that way.

When it comes to religion I don't think it's straight forward either. I don't think it's as simple as saying all women are supposed to be stay-at-home-moms. It's clearly stated in the Bible that we are supposed to take good care of and use the gifts we've been given for the good of others. Regarding this I need to really pray and turn to God for guidance the next few months. Because right now I am not sure what He wants me to do. I have a M.Sc. in engineering physics and am a graduate student in numerical analysis. So it's clear that I have some talent for these things. Mathematics was also one of my favorite subjects in school. I see this as a gift that God has given me. So, should I then really give it up?

As I said I will need to pray a lot about this and in the meantime just take one day at a time trying my best but not pushing myself too hard. You're welcome to pray for me too regarding these things and of course for my health and my loved ones too. :)

Lots going on since the last update

2009-01-06T15:28:00.005+01:00

I had the colostomy surgery in October. I am very pleased with the results. The IBS symptoms/problems are almost completely gone. However I did get problems with severe heartburn and sensitive stomach after the surgery and am taking Nexium and Andapsin to protect the stomach. I still have symptoms from time to time and need to be a bit careful with what I eat but I feel pretty much ok.

The plan was that I'd get back to emptying the bladder by using my abdominal muscles once everything had healed but that didn't work. I find it much more difficult to get the right contact with the muscles now and tensing and relaxing them in the right way plus I am still a bit scared of pushing hard because of the potential risk of developing a hernia. So I have kept doing the ISC. Most of the time it works well or at least ok, but sometimes I get problems with pain after the bladder emptying. I think this is related to my nerve pain. Annoying! I haven't tried any medication for the nerve pain as I am quite sensitive to drugs. Plus from what I have heard the efficiency of the drugs is not extremely high compared with the risk of side effects. (I don't mean to discourage anyone from trying drug therapy for nerve pain though. This is just what I think about my situation.) Another interesting thing is that my detrusor (bladder emptying muscle) seems to have become stronger after I started doing ISC since it now gets to do the job itself instead of relying on the abdominal muscles. This has made it possible for me to start urination the normal way a lot of the time, however the degree of voiding varies greatly. I try to do this sometimes in order to rinse through the urethra. But sometimes it is better to just do ISC as I have found that my nerve pain can get triggered by contact with urine when the nerve pain is more active. (Doing ISC means there is no contact between the urine and the urogenital area.) Having a stronger detrusor has its downsides as well... Especially when the nerve pain is more active I can get detrusor overactivity problems and since the muscle now seems to be stronger the contractions can lead to quite bad urgency problems... Yippiiie, a new thing to bring up with the docs... I wouldn't mind terribly having to wear protection of some kind, if they were really leakage proof or close to it, except for the fact that it gets hot and sticky and this tends to trigger my nerve pain... I can't imagine the urine would make it better, considering what I wrote above about urine and nerve pain, if I were to have a more severe leakage problem. Thus far I have only had minor leakage issues, more related to strain than urgency. It's the urgency component that is fairly new and that I worry might lead to more severe problems.

To end on a positive note - not pushing anymore to empty the bladder and bowels (and it is possible that the more correct bladder function that comes from doing ISC has had an effect too) - has led to much better contact with the muscles in the pelvic floor and I feel I can now contract the muscles in the front part of the pelvis. I am trying to learn to practice using these muscles instead of crossing my legs and using the "wrong" muscles to keep it in when I have urgency issues. But it's tricky - the force of habit is strong.

Here's a picture taken of me 3 weeks after the surgery. It's now been 3 months since surgery so the photo is a bit old... :)

Speedicath Compact: the coolest thing for ISC

2008-09-03T19:22:00.008+02:00

Since I got TM I have had to use my abdominal muscles to push out the urine when I empty my bladder. It has worked pretty well for me. The thought of intermittent self catheterisation has not been very appealing to me, especially since I have problems with nerve pain in the urogenital area. But after I have had the colostomy surgery I won't be allowed to do anything that increases the intra abdominal pressure for at least a month and this means I have to learn to do ISC.

I had never done this on myself before, but only had nurses do it and that has not been a pleasant experience. And when I tried it at the urologist before summer it was pretty bad. Actually the nurse ended up doing most of it and it hurt really, really bad. I had to use one of those "small" catheters for women, and I am being ironic here, because small isn't small at all but pretty long, and you end up having to hold the actual catheter with your fingers, and trying to push something that is really slippery into your bladder isn't easy, plus touching the catheter increases the risk of UTIs. So, I said that if I had to do this I wanted another catheter that I had found, that's called Speedicath Compact. I thought it would be easier with one of those.

I am still a bit worried about a couple of things when it comes to ISC and that is the nerve pain and what that will be like when I have to use a catheter a number of times every day, and the risk of UTIs. I haven't had a UTI in almost 11 years and I don't want any! The tricky thing is that when you do ISC you aren't supposed to check for bacteria in the urine if you don't have any symptoms since people who do ISC can have bacteria without having an infection. But for me it's hard to separate symptoms of a UTI from my usual nerve pain. So I will have to work out a strategy for that stuff with someone later.

Anyway. Today was the first time I tried doing ISC by myself. The number one challenge is finding the urethra, because I do not look like the anatomical picture you get from the urologist. I wonder if any woman does. There are a lot of stuff in the way that they don't draw in. I suspect this is true for most women. I used a mirror. I wonder how I will be able to do it without one... :) But here's a tip if you're trying to learn to do ISC and it's possible for you to do what I suggest. I used a big rubber band that I attached around the back of the toilet. Then I had a medium size mirror with a thing on the backside so that it can stand on a table. I used that "thing" to attach the mirror to the rubber band. Then I actually sit backwards on the toilet. This gives a lot of extra room in front of me plus it gives me access to my mirror.

I was a bit worried and it was quite tricky to find the urethra but once I had found it the catheter just went right in without it even hurting the least bit. I thought I was in the wrong place but then I felt a bit of pain and that the bladder was irritated and then the bladder emptied. The bladder didn't feel completely empty, but when I tried to use my normal bladder emptying technique afterwards hardly anything came out so I guess it was empty. I will continue to test this so I see that my bladder empties completely.

It was so much easier with this new little catheter! Plus they are small and easy to take with you in your purse for example, or even in your pocket. I don't know if you can get them anywhere in the world, but they are manufactured by the company Coloplast and are called Speedicath Compact. Below are a few pictures so you can see what they look like and how small they are.

EDIT: Tried a second time, the next time I needed to go and it went really smoothly, apart from hurting a bit more. But then again, the urine was very pale indicating that the bladder had filled up quickly and I ended up having to go back and forth a few times with the catheter until I realized that it was probably not that the bladder didn't empty but that it actually was filling up while it emptied. I confirmed this by just holding the catheter in one place and waiting and sure enough after a while it started dripping continuously, and after I had pulled the catheter out I emptied the bladder a few times with my usual technique and yes, it did fill up quickly so now I know how that looks in the world of ISC. :) Like I said it hurt more this time, but I don't know if it's because I tried again so soon after my first ISC or if it was because I ended up going back and forth more. I can't remember if the initial pain was at the same level or more intense. I am waiting now for the residual pain to go away. We'll see if that takes longer than the first time or not. I hope not. I hope pain won't be an issue. I don't want more or worse nerve pain or pain in between ISCs. But I can handle if it hurts a little bit during the ISC as long as it doesn't get a lot worse than these two times.

Vacation pictures

2008-08-30T16:51:00.009+02:00

I spent most of my summer vacation this year either at home or at my parents' place in the countryside. Here are some photos:

This is me out walking where I grew up. You can't see our house though. It's behind the barn and the trees in the left hand side of the first picture. This was one of the really warm weeks during the summer. It was pretty much like being in the Mediterranean area. (Oh, and don't make fun of my shorts - I made them myself when I was 10 or something like that. And I can still wear them. :))

I only went swimming once this summer, and it was a quick swim too, because dark clouds covered part of the sky and we heard some thunder. (And we pretty much only made it to the car before it started pouring down.)

This is just me sitting at the kitchen table in my parents' house. Jonas likes taking pictures when you really see no reason for it. :) (It somehow seems to be more fun to him taking pictures of me when I don't want him to, than when I actually ask him to.)

The last picture in this post is not really from my vacation but from just a few days ago. It's just to show you that I have started playing around with jogging a little bit. (Very gently and slowly though since my pelvic floor muscles don't like it when I bounce around too much.) Oh, and in case you were wondering what I am holding in my hand, it's a plastic bag with a basil plant in it. We were on our way home from the store. :)

Following your heart - confessions of a "good girl"

2008-08-25T17:18:00.013+02:00

I have been struggling for a long time trying to figure out what I want out of life. Growing up, I really think I identified myself with what I did, how I performed et.c. It was very important to me to do well in school. Not really because others pushed me in any way, but I pushed myself - really hard. Looking back now I can hardly believe the amount of work I put in and the discipline I had. I liked school, I really did. But looking back it seems a bit too much. In junior high and high school I used to get home from school, have a snack and watch tv for a half hour or so and then I'd hit the books. I'd do all my homework and if I had time get started on some of the home work for the next few days. If I had a test the day after, I'd study and then choose one tv program I really wanted to see and have my dinner in front of the tv and then continue studying until I felt I was done. (I had my own system for knowing when I had done enough.)

When I applied for university I had no idea what I wanted to do. I just picked something that my teachers said was a good program and that sounded prestigious. And what happened? I picked the MSc program in engineering physics at the local university (something that I have later been told is rumored to be the most theoretical engineering program in Sweden). Pretty much from the start I got bad stress symptoms and my performance anxiety went through the roof. By the time I was half way through first semester, I wanted to drop out. (So what did I do? I applied for med school and got accepted (as if that would have been less stressful), but in the end I decided to stick with the engineering program. I found some subjects that I liked more, which helped but I still wasn't very happy. But I am a person who likes to finish what she's started.

By the time I graduated I had already been accepted to a PhD program and the stress and pressure continued. After two years of that and an extremely stressful couple of weeks my body just told me to stop. The IBS symptoms that I had had for quite a few years got bad and pretty much constant and my focus shifted from work to trying to get back to a healthy and happy life. What followed was a painful series of tests, first to rule out other problems and then to try to get some help and get my life back to some sort of normal.

Here I am now, 3 years after the onset of the pretty much constant IBS, waiting for a colostomy surgery that will not fix the IBS but that will hopefully mean that the IBS won't have as big an impact on my life anymore. When I first got ill I didn't get as much medical leave as I needed and now I am facing a very stressful year when I need to do a lot of work and finish my PhD to make sure I don't get problems financially. However I really want to get my degree since if I don't then it would feel like I suffered through all of this stress and really have nothing to show for it. So I at least want my degree. But saying that I have also changed my priorities a lot...

I want kids, so that's a step we'll take as soon as possible, when the timing is ok. (Not looking for perfect timing though because then it will never happen... ;)) As far as work is concerned I don't really care... Yes, I would like to make a difference, and yes I would like to have a meaningful job, but honestly, the most important thing for me right now, is being able to work. I want a job that I like, that doesn't bore me to death and where the coworkers are nice and that pays the bills - a job that I can do without wearing myself out, a job that doesn't leave me totally crazy with stress. I have made "being good at what I do" and "performing to a certain standard", i.e. being the poster woman for the "good girl syndrome" my number one priority for too long. I have done it to the point where I have skipped meals, skipped sleep and kept bathroom breaks to a minimum because succeeding and being good at what I did was so important to me, and guess what? My body can't take that anymore. My mind can't take that anymore. I need to make myself my number one priority and by that I mean putting my physical and mental and spiritual health and wellbeing before other things.

Making yourself a priority is not easy. Sure some people do it and a bit over the top. But what I am talking about is not pure selfishness. It's about recognizing the fact that if you don't love yourself and take care of yourself then you'll have nothing left to give to others. I have always loved myself on an intellectual level I think, but I'm not so sure I have done so on an emotional level. And even knowing what I have been through in my life - all the health issues et.c. - and knowing how much I have cried and how miserable I have been sometimes, not to mention the bad effect that stress and not taking care of myself has had on my body and mind, I am still feeling a bit guilty when I write about putting myself first. I am a Christian and within Christianity putting yourself and your own needs first is not very p.c. But as I mentioned above, I am not talking about pure egoism but about loving yourself. I have found that the less I care about myself the less energy I have to give to others. I know the Bible says that we are supposed to be each others' servants and that it is the humble attitude of a servant that we should strive for. But Jesus also said that we should love others the way we love ourselves. So if we don't love ourselves then how can we love anyone else?

It's funny (and by that I mean strange and not funny - haha) the way I have allowed myself to treat myself. Because when I think about it, I would never want to treat anyone else the way I have treated myself. I would never say to another person that they can skip lunch or sleep and put that time into their work and I would never be as critical to others as I have been to myself (and believe me, I can unfortunately be rather critical to others).

I still don't know what I want to do with my life apart from having kids, and I certainly know that life won't get magically easy just because you make a certain decision, even if it is a good one, but with that said, as I mentioned above I have really decided I need to make myself - my health and general wellbeing - my number one priority in life. And I really don't think anyone should have to feel guilty about taking good care of themselves. I figure, since God has given me this life and loves me, I should try to do a good job loving and taking care of myself too.

Blog presentation

2008-08-17T15:21:00.001+02:00

Welcome to my blog!

On this blog I write about my everyday life, my interests, probably a bit about my faith, and most likely a lot about living with different health issues. I got transverse myelitis (TM) as a 12 year old, back in 1991 and that changed my life in many ways. More details about this can be found in my TM story in the link list on this blog and you can also find my current health issues listed in the margin of the blog. I got problems with nerve pain in 1999 probably as a result of the nerve damage from TM. I also have IBS-D which developed gradually from 1997 to 2005 when it got pretty bad. I then started a painful process with tests to get a proper diagnosis and since the combination of IBS-D and pelvic floor dysfunction from TM is far from optimal I have since 2006 been tested and treated also at the surgery department of the local university hospital and am currently waiting for a date for my colostomy surgery.

I write this blog to keep track of all the stuff that's going on in my life, particularly regarding my health, but I also hope to be able to inspire others who are facing or have faced big or small obstacles in their life.

As the title of this blog implies I acknowledge the impact - both good and bad - that TM and other health issues have had on my life, while trying my best to stay focused on the present. After all, the present is the only part of our life that really exists.

If you have any questions or comments, feel free to use the comment function or email me at: upettersson[at]myelitis.org

Once again - welcome to my blog!