Counting the good stuff

Good things:

I bought a pair of jeans that fit, and they actually look good on me! I am wearing them today and I feel much, much better about my butt. I also bought two knitted sweater dresses (one purple one white) that I can wear with tights or over pants. They are good because they are a size that fits me now *and* they are long enough to hide the fact that my old pants look so baggy.

I had a home-spa day yesterday and epi-ladied my legs and waxed my bikini line (ouch) as well as painted my nails. I feel a little prettier, although my face is still *huge* and round and not looking like me at all.

I also did a short session with light weights yesterday. Admittedly I had to reduce the weight on my dumbbells from 15 lbs to just over 8 lbs and I only managed one set of 10 reps, but still! I made a new weights program while in the hospital and it works really well. It has squats, sumo squats, lunges and reverse lunges, so hopefully that will have some effect on my chicken legs. I am resting today (just hanging out at home) to make sure I won’t over do it, but I feel good.

I ate reasonable amounts of (peeled) carrots and apples *and* homemade lasagne with ww pasta and a lot of vegetables and it worked out with my stomach! Now I will eat about the same today and then try to introduce peels like tomatoes and bell peppers tomorrow if that goes well.

I talked to my doctor on Monday after having another set-back, and he said to not reduce the cortisone as fast as we originally planned. But right now I am at 20 mg/day and I think I can live with that. I am still feeling pretty high and unable to work or focus on more difficult things or in noisy environments, but otherwise I am ok. I am able to do at least one thing like take a walk or meet someone every day, and that is a huge step forwards. I am even contemplating an easy run/walk in the next couple of days, if I continue to feel stronger. :)

I have a full month off from work on sick leave. All of November! I feel a bit guilty about this, but right now I am seriously not able to function in a lab environment. I need to be mentally sharp at work, make fast decisions, multi-task, stay on my feet for more than 8 hours per day and be steady enough on my hands to perform micro surgeries. At this time I can’t do any of that, so I am not questioning my sick leave at this point. But it feels kind of nice to have this whole month to rest, recover and come to terms with the diagnosis.
And besides, if I feel like I *can* work I can go back earlier.

Yay!

Sunday thoughts

I just cancelled our flight to San Francisco for tomorrow. It is a mixed feeling of relief about not having to make a long, exhausting trip but also regret about missing out on a something we have been looking forward to. Bye, bye donuts and clifbars and cheep running shoes. I’ll be here with my Swedish cinnamon rolls and work on my recovery instead.

Today is Åland marathon. It feels far away now. I am still at a stage where some days I can’t leave the couch and every day that I can manage a small walk is a victory. I know I would have had a great race and most likely run a time in the 3:30’s if I hadn’t been sick. However, marathoning is a great sport in that you can race and improve until very late in life. I see myself running and racing both marathons and shorter races in the future as well, so I am not feeling too bad about it.

Violentfemme sent me a PM yesterday about a runner/triathlete her mum was working with who had UC and still did great at the sports. That made me happy. It also made me think that I should sign up for Stockholm marathon this spring. Yes, I might have to drop out if I have an episode during training, but so what? It will at least give me something to train for and to look forward to. Maybe I won’t be able to train as hard for it or race it as fast, but it will still be a beacon of light in the non-running tunnel. I was planning on focusing on my dissertation during spring, but one thing I have learned in the last few weeks is to not put off the things that make us happy. Life is *now*, and it is fragile. Running and training for marathons make me happy. It is a stress releaser and my main drug of choice. It makes me feel alive. It is not something I am willing to put on hold. I could have died a few weeks ago and that has made me think differently about a lot of things in life.

Right now any run at all would make me happy. I hope that by maybe next week the cortisone will be down to a level where I feel more like myself and *maybe* then I can venture out for a short walk-jog.

I think I will by myself some new pants. Some that fit. I wasn’t planning to, since I expect to get back into my old ones soon. But my butt is gone. And it looks kind of sad. I have Paris Hiltons flat pancake butt now. And since most of my pants were bordering on being too big before already, they look absolutely hip-hop on me now. The only ones that look remotely ok are my former skinny jeans, which now fit me like regular jeans. So next week I’ll get some cheap smaller pants and start doing lunges!

Sad days

The last two days have been really hard. I have been physically exhausted, dizzy and tired and feeling very out of it. My stomach hasn’t been very good either. It is tender and sore and not healing as fast or as nicely as I, ever the optimist had expected. I also got the test results back from the horrible coloscopy and it confirmed chronic inflammation of the about the lower half of the intestine. The jury is still out on whether it is UC or Crohn’s, but that doesn’t really matter at this point, since the treatment would be the same and it can take years to separate the two. My doctor wants to phase out the cortisone as fast as possible since I am getting so many side effects and I am all for that. I just worry that the inflammation is not going down fast enough.

Today I think I will cancel the trip to the US. It just doesn’t seem possible, and I can tell that my doctor doesn’t want me to go. And I know that he is right, it would be a stupid thing to do right now.

I have been reading up on UC and Crohn’s and it is kind of depressing. A lot of people seem to have to have multiple surgeries removing large pieces of intestine. Many of them had :whispers: colostomy bags. Although there is medication it doesn’t seem to be as effective as I had hoped. All of that is making me feel pretty low.

I am also starting to let my mind touch on the implications for the future.

Emil and I had just started to try for a baby when this happened. With the high doses of cortisone and the antibiotics, a pregnancy is not a good idea right now. I may have to go on birth control pills to make sure we don’t get pregnant now, and since my episodes seems to have been partly hormonally triggered in the past it might reduce them. I am starting a new medication today, one that I will be on continuously and it is also not safe during a pregnancy. Besides, my body needs some time to heal anyway. But it means we are a little bit sad at saying goodbye to our imaginary Summer Baby. He/she is not going to be made.

I may have to rethink my timeline for the dissertation.

I may have to rethink what kind of job I could have in the future. It might be that I will be sick for periods, and I have to find a job where that would be ok. But I realize that my stock on the job market drops with a diagnosis like this. Is there anyone out there in their right mind who would hire someone with a diagnosis that says “chronic”- something if they had a choice?

The same goes for working in countries with private health insurance. If my husband has diabetes and I have a chronic autoimmune inflammatory disease, who would want to provide insurance for us on a private market?

Dude, I admire anyone who managed to read to the end of this depressing post. I will now go pull myself up by the bootstraps and take a break from all the doom and gloom.
:pulls herself up:

Two steps forward, one step back

Yesterday was such a good day. With the sleeping pills I got 8 hours of sleep the night before, and that made me feel so much better. I took a walk in the afternoon and felt relatively energetic. Like I wasn’t the slowest walker in the park, or the sickest looking one. I saw a lot of runners, some of them even wearing shorts in the beautiful fall weather. I can’t wait to run again. I miss it so much. Still, I have this feeling of deep gratitude inside. As I was walking in the park I thought about what could have happened. I didn’t realize it at the time, but I could have ended up with emergency surgery, where part of the intestine has to be removed. Something serious like that could have happened before I even ended up in the hospital. I feel so grateful to be alive. When I came home I had a Get Well card form Tanya, all the way from Australia. It made me so happy! You are seriously too sweet and it made me so happy and even more grateful for everything I still have in my life that is good.

Today is hard. I planned to walk to Emil’s job with him to take copies of some papers I need to send in for the sick-leave. Well, Emil is used to me being healthy and full of energy and I am maybe not good enough at saying “stop, slow down, I am sick”. So instead of just getting me the photocopies, he just had to do some “quick set-ups” first. An hour and a half later I was still sitting by some humming machine, too dizzy to walk home but unable to sit up straight. And Emil was like “So you are not coming to lunch then?” DUH! Do I look like I freaking COULD? I just burst into tears.
He walked me back home. I think he realized it was serious. Since then I have been laying down on the couch all day. Feeling really tired and out of it today. I am eating, eating, eating too. Good, healthy stuff, but also lots of ice cream and cookies. I feel guilty about that. I need to be kind to my stomach. I need to pay attention to what I put into my body. The cortisone is messing up so many hormonal systems, including hunger, so this is not the time to eat on auto-pilot, especially for a former marathoner. But I am giving myself a break today. I am so tired I could just fall over. Too tired for discipline. I will do better tomorrow. Tomorrow *will* be better in many ways, I am sure.

Thank you all for your kind comments. It means so much to me! Love ya.

The bad, the good and the embarrassing

The bad:
I woke up at 3 am again. I can’t sleep from the medication. I am so wired all the time, like a meth-junkie. The signals that tell my body to go to sleep are screwed up. I usually fall a sleep after a while at night, but I only get four hours before I wake up and can’t go back to sleep. I read feel-good books about Mma Ramotswe (In the company of cheerful ladies by Alex Mc Call-Smith) and try to relax. At 6 I get up and eat and take my medications. An hour later I am sweating and riding the cortisone high for a new 24 hour period. This has to get better. I must be able to sleep to be able to heal.

The good:
I called my doctor and told him about all the side-effects I was having. He said that we can cut the cortisone with one 5 mg pill making it 35 mg/day instead of 40 mg/day. We will also cut out one pill every 5 days instead of every 7 days. It is still a lot of cortisone for a long time, but at least it is better than before. Hopefully we will have all the results from the tests soon and then we can start some other, more specific immunosuppressant too. He also prescribed sleeping pills to help me get some rest. I have never taken anything like that before, except OTC stuff and melatonin when jet-lagged. But at this time I know I need it. I surrender and try to be grateful for the magic of chemistry.

The embarrassing:
I went to the pharmacy to pick up my new medications in the afternoon. As my number is called I realize that I know the girl behind the counter. Hr name is Caroline and she was two years below my class at Uni. Although we don’t know each other all that well we share a lot of close friends. Although I like her, she is not someone I planned on telling first hand about my experience. Except she is already studying my prescriptions for rectal cortisone foam “for rectal inflammation”, one eyebrow raised. What can I do? I want to douse myself in gasoline and set fire to myself. Or shuffle my feet rapidly until I have dug a hole through the polished hardwood floor big enough to hide in. Instead I try to act like I don’t care. She asks how I am doing and if the doctors showed me how to use the foam and not to take the antibiotics with alcohol and only one sleeping pill/24 hours... I try to be relaxed and honest and I might even have thrown in the word “rectoscopy” jokingly in there at one point. She is kind and sweet but as I leave the store I know that soon all my friends and acquaintances will know. I will be The Face of the Rectum. The Spokesperson for Bleeding Bowels. Umm, yeah.

You gotta try to laugh at life sometimes. The absurdity of it all.

October 21st - the physical changes

Sunday. Emil is at work and I am home alone. It is time to take a look at the physical. For the past few days I have been going about this in a very roundabout way. I have seen the way my jeans hang off me. I have heard everyone telling me how frail I look. I have heard the way my wedding rings makes a sound like Spanish castanets when I move my hand. I have felt my body in the shower. It felt like somebody else’s body. Not mine. It can’t be.

I take a shower and then I stand naked in front of our mirror. I can’t believe what I see. My hands start sweating and I feel light-headed. It is so different. I used to be so muscular. And it has just wasted away. I have lost so much bodymass. I’d estimate that I have lost close to 20 pounds of muscle. My legs and arms look completely different. I am retaining a lot of water from the high doses of cortisone, so the scale is not telling me much. I am down about 6 pounds but I know the loss of muscle, fat and bone mass is way more than that. The water sits around my body in a smooth layer, about half-an-inch to an inch thick. It is a bit like being covered in a layer of jelly, as it sits under my translucent skin. I look skinny-fat. I look unhealthy. Ugly. I raise my head and look into my own eyes in the mirror and I say out loud in a shaky voice: “I am so sorry, Body. You look like you have had a rough couple of weeks.”

Even with my degree in medicine and pharmacology I honestly didn’t think it would be possible for a body to change so much in just ten days. What I am seeing are the typical effects of high doses of cortisone. I lose muscle mass, body fat and bone tissue. I collect water instead. I will collect the weight back as fat, mostly in the stomach area and on the back. My face is swollen and round, known as “moon face”. The skin is thin and paper like, with purple vessels and a red flush to the cheeks and chest area. My bones, muscles and tendons will be weaker. My immunity will go down and I will be susceptible to all kinds of colds and infections. I am taking high doses of the medication and it is affecting my entire body. I will be on the medication for more than eight weeks, slowly lowering the doses. That is the sad truth. I need to accept that and learn to love my body again. I need to help it though this.

October 20th

I don’t know what to write. So much is going through my head. The medication is making me really woozy and confused. I have started talking to myself out loud, like one of those old confused ladies you sometimes see in the subway. It gets better later in the day, but before lunch I am pretty much handicapped. It is the Cortisone, and I hate it. Hate it. My doctor said some people like it because you feel a bit high. Well, it is not my favourite poison. It makes me feel speeded ad slow at the same time. Like I am never awake but I can’t sleep either. I have no idea how it will be possible for me to work while on this medication. I need to be able to *think* at work, to be mentally sharp. I also need to be able to multitask and perform well with my hands. Right now I can barely cook a simple dinner without setting myself on fire.

Those are the mental effects of the medication. I am just starting to check out the physical changes, but it is a little too painful to grasp just yet. I can’t write about that now.

I need a crying break.

Ok, I am back.
At times I feel like I am immersed in this deep blue, still sea of sadness. It is not a raging sea, just a huge flat body of sadness running trough me. Everything around me here in my home *looks* the same but it feels different. So much has changed for me in such a short time that I am lost. I am not the same person who I was two weeks ago. I will find my bearings again and I will grow and learn and be happy again. But right now things are difficult.

To celebrate the small victories in life: I am eating again. I need to phase some things like fiber, peels and beans back in gradually but there is already a lot I can eat that I enjoy. Yesterdays pleasures:
*Yogurt with protein powder, blueberries and low fiber cereal.
*Peeled apple and Lära bar (Ridiculously expensive, but I wanted a treat for the train ride)
*Fish and mashed potatoes
*Peeled apple, carrot juice without pulp
*Roasted butternut squash, roasted peeled peppers, avocado, leek, sesame seeds, roasted salmon with an asian dressing
*Homemade frozen blueberry yogurt ice cream with ginger snaps
And the stomach is fine so far. I love to be able to eat some colourful stuff again. After so many days on just a white sticky liquid drip I was really ready to kill for a vegetable. It was kind of interesting to see what kind of food I missed the most. At times I could have killed for chocolate, but mostly I missed the following: blueberries, oranges, arugula, pomegranate, yoghurt, apples, raspberries and avocado. I am so happy that this disease is not caused or affected by diet, since I would hate to have to live on bland food for the rest of my life. I saw a dietician before I left the hospital and I will see her again later for check-ups. Now I phase things back in and then I will be able to eat as usual, with the possible exception of some very high fat food or during a break-out of active inflammation.

Keeping this positive attitude I will now go put in some make-up and try to go outside for a short walk with Emil. I am so happy to have him. He is such a pillar of support for me. With him I feel understood, supported and loved. He is the best! :love: