Wednesday, September 30, 2009

Never fear, I am still here!

Where have I been you may ask? Well, at my new favourite place. The Gym. Really. Truely I have. No seriously, stop laughing. This exercise allergic, only runs if being chased, scared of getting sweaty or dirty girl has joint a gym. And I LOVE it. It helps a lot that I have found the right one for me, a supportive environment, nice and small, and people with knowledge of heart conditions and programs developed just for me.

And I have all the motivation I would ever need. I have overcome heart failure so there's no WAY I am letting this liver condition get any worse. I have talked about that right? I have so many reasons to get fitter (To get better, strengthen this tired heart, lose weight, gain confidence.....) and I have so much support I feel this is really going to work. And by that I mean it will help me feel semi-normal again.

Because who am I kidding, I was only semi-normal to begin with ;)

Stay tuned, I'll be posting more regularly over October! :)

Tuesday, September 15, 2009

What does it mean when....?

You go in for an ultrasound of your liver and the technician ends up spending a large amount of time looking at the kidneys?

This is the annoying thing about having tests done. The waiting for results. The inability of the technician to give you a hint as to what may be going on (You know, the whole blink once if it's fine, twice if it's abnormal, three times if it's really bad. Wait, how many blinks was that? Oh, there's something in your eye. You're not playing my game are you?).

And then there's the surprise questions. Absolute silence while the liver is scanned. OK, no hints there and even though I'm watching the screen I can't be right or perhaps my liver has in fact imploded. Scanning the kidneys now. Wait, questions "Do you drink a lot of water? What medications are you on? Do you get back pain? When do you see your doctor next?"

And that last one was followed by a, "Well, I'd probably go in and chat with your doctor within 48 hours. They'll have results by then."

And knowing my luck, I will in a panic go to an appointment that's been pushed forward at the annoyance of the medical receptionist to find out..... It all looks fine. I'll keep you posted.

Wednesday, September 9, 2009

The royal twin We

I'm not sure if this is a common occurance with twins, but our boys seem to use 'we' an awful lot. For example;
"It's we's birthday soon isn't it?"
"We want a drink. Not James, just we."
"We want Ben10. Now we both Ben10 and we watch it" (There's only one of them in the room)
"We is in the playroom. I go get him?"
A little disturbing. But then, yesterday;

The boys came running into the lounge from the playroom, both saying "He broke the train track!". Wow, some individuality. Knowing it was unlikely they would actually admit who it was I asked anyway.

"Who broke the train track?"

To which they both replied - in unison which is what one does if one is a twin - "He did."

They then repeated this over and over, moving closer and closer to each other with each sentence. Once they were standing next to each other they put their arms around each other and declared "We did!" before running back into the playroom. I looked at my husband and said one sentence before returning to my craft making. "Twins are really odd." Ahh but how we, I mean I, love them.

Advice Please :)

I'm trying to make a decision here. I thought it would be an easy one but now I have found so many options to try over the next three months I'm not sure what to try first.

Okay, so it's rather apparent that I need a major lifestyle change to try and regain some of my health. In particular in the area of food. So what hasn't worked so far; making my portions smaller, drinking more water, drinking less water, watching salt intake, following at home weight watchers. Despite the fact I am not losing weight (And in fact somehow continue to gain) I am still following a smaller portion, 2l fluid, lower salt weight watchers diet. I figure there's no point in adding to the problem by eating badly!

So one thing I know I can work on and change is snacking after dinner. This is my bad time when I'm more likely to eat something sugary or high in salt. But otherwise I'm at a loss. My exercise is restricted due to my health issues at the moment which is always a problem!

Should I go Low GI due to my insulin resistance? Should I go gluten free in case of a possible gluten intolerance? Do I do both at once? What concerns me is making the changes too quickly and then 'burn out' on my new way of eating and make the weight loss even harder as well as making my health worse. It's certainly not going to be a yo-yo diet. At the same time I only have three months to show some results after two years of gradual upward sneakage in weight.

So I'm a little anxious and unsure where to start. Advice anyone?

Tuesday, September 8, 2009

Three months and Counting

I had my three monthly visit to my GP and Nurse today. Basically I go a lot more, but every three months is a long scheduled appointment to make sure all the testing and specialist appointments are on track, and a run down of how things are looking as well as me just being able to talk about anything I've been finding hard. Like a counselling session with medical input and blood tests.

So I had my three monthly blood draw to check on my kidneys. Also a mass of other tests, which we already know the likely results of but are keeping an eye on. My inflammatory markers which were still very high at the last blood test, my liver tests which have slowly been raising and are now in the abnormal range. A test to make sure my breathlessness and high heart rate are not due to a worsening of congestive heart failure.

Next week I head off for a scan of my liver, a chest xray and FINALLY on the 12th of October I will be having my Cardiac MRI. This is the test a lot of my specialists are waiting on to see if the inflammation markers are indicating an ongoing inflammatory process in my heart. I'm incredibly nervous about this test, with a mixture of feelings about the results themselves. On the one hand if it comes back all clear that would be wonderful but the search would still have to continue about what is causing all these abnormal blood results. Then if it comes back showing something that would be so scary for the obvious reason.

The other thing to come out of today's doctors visit is a three month limit. I have already booked my next three monthly appointment and it comes with some time limits. There are some health issues that if they haven't stabilised or improved by then further more invasive measures will be looked at. For example one of these are my heart rate, my beta blocker is being increased even further and we had a discussion around pacemakers. Once I'm at the maximum dosage for the beta blocker, which I'm heading towards now, that becomes one less option for controlling my tachycardia. There was one other self-imposed time limit in regards to the struggle with my weight. My insulin resistance is worse making it harder to loose weight, and can lead to other serious health conditions such as diabetes. I have following a careful and well balanced diet and have been exercising as much as I am able and have continued to gain weight these past two years. There is no reason for it hence it being one of the symptoms on my medical mystery list, but at the same time I have put my foot down and if in three months my weight has not stabilised I want to trial some other options.

This is a really hard topic for me as it has been one of my major struggles since getting sick. I've seen so many doctors and none of them can explain why with my diet and exercise levels I have gained weight. I have seen a nutritionist who could make no changes to my eating plan as it was already low in calories and well balanced. But I am at the point that there seems to be no control over it and I want intervention. There are not many options open to me due to my health issues, but it's also not healthy for me to continue to gain weight. It's a catch-22.

So really this next three months are my trial period. Can my heart rate be controlled by meds? Can I finally crack the mystery of the creeping weight gain? Is my liver processing all my meds appropriately or is it under stress as well? Am I in heart failure again?

So many questions, so many challenges and so little time!

Thursday, September 3, 2009

30 Things About my Invisible Illness You May Not Know

1. The illness I live with is: Dilated Cardiomyopathy

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: certainly Heart Failure symptoms right through 2005, but I have had arrythmias since my teens

4. The biggest adjustment I’ve had to make is: Allowing my boys to go to a caregiver three times a week.

5. Most people assume: I don't know what people assume. I know I assumed someone with heart failure was near-death and would be on bed rest in a hospital. It was weird to be walking out of a cardiologists office and going home after such a diagnosis.

6. The hardest part about mornings are: Waking up still feeling tired. Like I've had no sleep.

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: My laptop.

9. The hardest part about nights are: Remembering to take my tablets, and managing to get to sleep at a reasonable time. (Nights are when I worry about everyone).

10. Each day I take about 15 pills & vitamins.

11. Regarding alternative treatments I: Am following my specialists advice at this time.

12. If I had to choose between an invisible illness or visible I would choose: Neither. Both are hard for different reasons.

13. Regarding working and career: Not working outside the home right now but haven't given up hope that I can pursue something in the future.

14. People would be surprised to know: That I never knew what a normal heart rate felt like until the dosage of my beta blocker was correct, and it felt so slow to me I thought I was dying.... don't laugh!

15. The hardest thing to accept about my new reality has been: Struggling with my weight, no matter what I do it just keeps creeping up.

16. Something I never thought I could do with my illness that I did was: Walk almost to the top of a steep hill off a walkway in my suburb

17. The commercials about my illness: I've never seen any.

18. Something I really miss doing since I was diagnosed is: Long walks. I'm building back up to them.

19. It was really hard to have to give up: Exercise when I was first diagnosed and my heart rate was unstable. Now it's just as hard to get back into it.

20. A new hobby I have taken up since my diagnosis is: Cross-stitch

21. If I could have one day of feeling normal again I would: Go for a run, take the boys hiking, clean the entire house in one go, take all my nieces and nephews to a park and play, then take them all to the zoo.

22. My illness has taught me: to slow down and enjoy the small things

23. Want to know a secret? One thing people say that gets under my skin is: When someone calls a cardiac arrest a heart attack. It's two different things!

24. But I love it when people: Give me hugs

25. My favorite motto, scripture, quote that gets me through tough times is: Happiness is not a destination, but a way of travel.

26. When someone is diagnosed I’d like to tell them: Get good support networks around you, find a way to keep in touch with close friends even if it's mass emails and take good care of yourself. Let others help you.

27. Something that has surprised me about living with an illness is: It doesn't go away. Obviously, chronic illness is chronic but seriously. It's there all the time.

28. The nicest thing someone did for me when I wasn’t feeling well was: Oh, I've been incredibly blessed by good friends and family. If you're reading this likely you have done one of these nicest things, THANK YOU.

29. I’m involved with Invisible Illness Week because: It's the first time I've heard of it and think it's a good cause.

30. The fact that you read this list makes me feel: As though you have too much time on your hands... LOL, no it's very nice of you.