To Ken

Your favorite song of all... I love you!

Nostalgiska 80-tals grejjer

Gud vad kul! Jag fick lite lust att gotta mig åt gamla svenska låtar på YouTube. Jag kommer ihåg när Herreys kom ut med Diggilo Diggiley i Melodifestivalen 1984. Jag var 10 år och tyckte att om DOM inte vann, ja då var livet slut! (Dom vann ju som tur var...) Nu när jag tittar på dem kan jag inte annat än skratta, det var ju oerhört vad hemska de var!

Annat kul jag hittade var Carolas Främling som var oerhört stort för mig. Jag var 8 år och lärde mig snabbt texten till den... Och andra gamla pärlor! Man kan bli sittande länge och ha kul!

Idag är det sorgligt nog min systers sista heldag här! Imorgon åker hon. Det har verkligen varit ett trevligt besök, även om omständigheterna kanske inte var de bästa. Helt klart det bästa Sverige-besök jag haft, speciellt med tanke på att det var 4 veckor! Hon är så snäll och lugn så man går inte alls varandra på nerverna.

Vi ska ut på en liten sista shoppingrunda, inte för att hon egentligen har någon plats kvar i bagaget, men ändå. Sarah ska hämtas vid 11:30, och sedan ska vi till shoppingmallet, äta lite lunch och shoppa lite mer.

Ikväll blir det avskedsmiddag på Outback. Sorgligt att hon ska åka, hoppas vi syns snart igen!

I love life!

I just wanted to let you all know that I am very happy today! I just feel great and am so grateful that things are going so great! I just feel so happy about life in general! I still have a rash, but I am being very good about not scratching, and I know it can take another week before it clears up. I have done what I can about it, so now I just have to live with it for a while, no big deal, even if it is very irritating. I am also very pleased that the partial intestinal obstruction I had yesterday seem to have cleared with the measures I took against that. Wow!

I was just thinking about the new, wonderful life that is now possible for me. Just a small thing like going camping. It used to be a huge hassle for me, not having a bathroom readily available. I am thinking that we should get away for an overnighter in a few months when temperatures start to dip a little here in Florida. It is still way too hot, but it would be nice to do a one nighter, maybe bring the dogs, go hiking and enjoy not having to worry about where I can find a bathroom.

I am NOT going to miss the cold sweat from fretting about holding it in while I hunt for a bathroom at a mall, now I can go when I feel like it! It must be hard to understand for someone who has never suffered from something like ulcerative colitis, but the total feeling of freedom I am starting to feel is AWESOME! It just dawned on me today, and I am just overjoyed. I have SO MUCH to be happy about I can barely contain myself.

Life is good. Life is awesome. Love you all! (And NO, I am not high on painkillers :) !

Update

I did some research about intestinal blockages when you have a J-pouch, and I did all the tips they suggested for fixing it. I think it is just a partial blockage, since I am not vomiting and I am able to go to the bathroom.

So the tricks I tired was drinking grape juice and hot tea, plus plenty of fluids in general. I also took the dogs for a long walk, which I think really helped. It was difficult, I was really feeling weak still and a bit dizzy, but my sister suggested I bring the cell phone just in case something happened.

I have now three times passed a few bits of corn, and the pain is not as intense, so I am hoping this means it is resolving itself. Sigh! I am really tired of all this, but nothing you can do but roll with the punches, as they say. It could be a lot worse, so I am still happy!

Carina and I are leaving in 20 minutes to have a girls day out. First we are going to see the flick Stardust, which I am really looking forward to. We both like sci-fi kind of movies, and I think this one will be fun. I very rarely get to go and see a grown up movie, nowadays it is always Disney movies for us, so I am thrilled!

Afterwards we are going by the mall to get some Estee Lauder stuff. We went shopping yesterday at the mall for many hours (me in a wheel chair), and we got all kinds of goodies. My sister has really been stocking up on Estee Lauder, since they are twice as expensive in Sweden. And right now they are having a really nice "gift with purchase" at our Macy's, so she has been getting a few things here and there so she can get a gift with each item she buys.

I really like Estee Lauder. I used to buy mainly Lancome before, but their stuff tend to have too much perfume in them. I like Clinique, but only for a few things. Elisabeth Arden is very nice, but often too pricey for me. Since I moved to Florida I have become so wrinkly, with all the sun exposure, so I definitely need some nicer products to combat that.

Doctor's appointment

No kidney problem, that is good! They didn't bother checking the liver. The doc said a medication like Protonix can stay in the body for 2 weeks, so it might take a while to get rid of the reaction.

They injected me with a huge dose of steroids and told me to double the steroid dose I was taking at home for a week.

They also switched out the Atarax antihistamine to something else that might work better for itching, but it is highly sedative, so it would have to be for night time. I dropped it off at the pharmacy yesterday, but when I came back to pick it up the pharmacy was closed for the day, so I won't get to try that until tonight.

The high dose of steroids seem to have done some good though, I noticed a calming effect somewhat in the afternoon. It also helped that I was wearing jeans (in 97 degree heat!) so I couldn't scratch it too bad.

I finally have hope there might be a light at the end of the tunnel on this one!

Now for ANOTHER possible medical "crisis"... Yesterday my sister made THE most delicious taco pizza. I had made guacamole with it, and together it was sooo yummy! Needless to say I ate a LOT! Unfortunately it had corn, which is suppose to be a big no no for me right now (but I have pretty much eaten all the foods on the no no list with no problems).

I have been running to the bathroom all night, no problem there (the food was spicy too, so I expected that). But this morning I woke up with intense pain in one spot on my stomach. It is driving me nuts! I am getting a bit concerned it might be a obstruction in the small bowl, which is very common in the beginning. One trick apparently is to drink grape juice to get rid of it, so Ken is up at the store to get some right now. Obstructions can usually be cleared up without surgery, and I am going on the J-Pouch community web site to search for more tricks right now. Keep your fingers crossed that I can fix this, if it is an obstruction.

When will my medical problems END?

I hate this!

After a few days of taking an antihistamine cocktail my doctor prescribed on Thursday after seeing him I am still itching like crazy!

I am now starting to get concerned. I nurse friend told me that sometimes kidney or liver problems can manifest itself with an itchy rash like this. And I am having a heavy, weird sensation over my kidneys, which of course scares the hell out of me!

I called my doctor's weekend clinic, thank God they have that so you don't have to sit in the ER for hours! They sounded very concerned too when I described my problems. Plus, they said I should have gotten better by now on the meds I was taking. (Very heavy duty antihistamines!)

So I have an appointment in 1½ hour. My "pouch" is feeling weird too, kind of painful.

And it is itching EVERYWHERE! Man I hate this!!!

Cabin fever

I am getting really tired of being couped up all the time. I am ready to start living normal life again, but it is hard when you are just so tired! I could barely walk to the mailbox yesterday. But I have decided it is time to start venture out. I am not too concerned with driving, since it doesn't require walking. Walking is my only problem. So. We are going to Wal Mart. It is only a 2 minute drive from here, and I am planning on riding on one of those electrical wheelchairs in the store. I just need to get out some.

The rash is worse than ever! Most likely because I can't stop scratching all over! I took two Benadryl at bed time last night, but they didn't do anything! I even scratched in my sleep!

I got a suggestion from a nurse friend today to ask for a prescription for a heavy duty antihistamine called Atarax. Apparently it is especially good for hives and itching. So I e-mailed my doctor and we will see if they can call that in for me. They are usually pretty good with responding fast. I sure hope so. This is driving me NUTS!

Tomorrow I am venturing out a little further, since I will drive to pick up Sarah at school at 11:30 AM.

Rash Girl

I have the worst of luck when it comes to anything medical... Today I am completely covered in a very itchy rash. It started a little bit a few days ago, but no it is from the tips of my ears to my toes! And ITCHING!

The only thing that is new and that I never have taken before is something called Protonix, and acid reducer that I am suppose to take with the steroids to avoid tearing up my stomach with too much acid.

I called the doctor. Only about 6 % of people get this type of rash. I looked it up on the Internet: the top layer of the skin can actually peel off! Great...

So no more Protonix. I am suppose to take Benadryl at night and use Benadryl cream. I also took some Claritin (another antihistamine) just now. Hope it helps. Ouch!

Labor Day Update

I am so tired of being tired ;-)

If I stand up too fast I faint, if I walk to fast I faint. I have absolutely no energy in my body! Very irritating! I am mostly just sitting around watching TV, it is too hard to relax enough to sleep when there is people in the house. But I have slept pretty good the last couple of nights.

Right now it is very quiet; Ken is at the kitchen table working, the dogs are sleeping, my very dear friend Linda came this morning and took my sister and Sarah shopping, they have been gone for 4 hours already! Last I checked in with them they had found all kinds of stuff. I am so happy Linda could take Carina with her, because it would really suck for her if she couldn't get a lot of shopping done while she now happens to be in the US for 4 weeks! We did have a shopping day before the surgery, but you know how it is, we women like to shop!

I am hoping so much I will get some strength back until next weekend, I had planned all 4 of us could go to this giant mall, Ken and Sarah could park themselves at the indoor playground (he could work on the laptop), and I could borrow one of those wheel chairs they usually have there so Carina and I could get around. That way I at least don't have to walk.

I had to get some groceries today, and Ken and I went. If it is just a few things I could have sent Ken by himself, but he is that kind of person that if you send him with a detailed list, and I mean brand, color what shelf it is on and so on, he will come back with the complete opposite, and then he gets mad if I don't like it. Luckily America has a lot of fat people (and a few handicapped people, but in this case they usually have their own wheelchairs), and you can borrow these electrical chairs in the store. You ALWAYS see obese people on this things! Scary... But today I was happy they had them, since I just can't walk around.

Ken supported me into the store, and it must have looked like I was drunk, very funny! I go to this store all the time, so most of the clerks actually know me, so I wasn't too worried about making a fool of myself. At least this way I could make sure we got everything we needed!

Before we left home I gobbled down a handful of Swedish Energy tablets, if you're Swedish you know what I mean, these "druvsockertabletter". It is basically pure grape sugar that athletes chew before a race or something. I was glad I stocked up on those this summer, since I often get tired.

I miss checking in on all my favourite blogs, but I just don't have the energy for it. Yesterday my biggest feat was taking a shower without fainting, and that was sitting down... Thank God Carina is here until the 13th!

For those of you who might not know, Carina is 10 years older than me, we have the same father. But this is actually only the THIRD time on our entire lives we meet in person!!! We have had contact for probably half my life over the phone, and finally when I was 6 months pregnant 4½ years ago she came and visited me here in Florida. That was so awesome! Then I met up with her again this summer on Gotland, and I also got to meet my niece Sandra (Sarah's cousin) for the first time. Carina has two beautiful daughters, and they are both the nicest girls you can imagine. Sandra is 15 and Christina, whom I haven't met yet , is if I remember correctly, 24. She has done an absolutely marvelous job raising these girls, I can only hope Sarah becomes somewhat like them when she gets older!

OK, now I need to lay down, I used up whatever energy I had for now!

Take care!

Home from the hospital!

I am finally home! Yesterday I was finally released and got to go home. It took a few painful days, but finally the new plumbing started to work. I am very amazed how easy things have been, considering I thought it would be a lot worse. I am very sore in the "pouch" area inside the stomach, but that should only last for a few more weeks or so. I have no stitches, everything is glued, and all in all I only really have two tiny new scars, since they reused some old scars. Amazing!

I was pumped full of TNP, so I got at least 2,000 calories a day, so I didn't loose too much weight, only about 10 lbs. I can imagine it would have been a lot harder recovering if I had lost more weight.

I feel great all in all, just very weak. I just fainted a few minutes ago, probably just stood up too fast. I had a very hard time sleeping last night, finding a comfy position is almost impossible, so it was after 5 AM when I finally slumbered in, and I was up before 8 AM... But I have nothing else to do but rest, so I am not complaining.

I am not going to write too much, I am just too tired, but I want to thank everyone for all the positive, encouraging comments. I really appreciate them all! My sister will be here until September 13, so I am looking forward to having her company until then!