Susan's Quest for Good Health After a Celiac Diagnosis (comments greatly appreciated)

[postesf]

She's alive...I promise!

 

[larry's girl]

So sorry I haven't posted in such a long time. I have had a rough couple of weeks and no time to do my trademark L-O-N-G posts. I always have so much to say, so I waited until I thought I would have time to finish the post I started!

First of all, thanks so much to all of you for checking on me. I appreciate you continuing to think of me like that. Scott, thanks for the info on the Mall of Georgia 5K. I have decided not to do the Run the Reagan because I have not trained more than a couple of days in the last two weeks due to illness and I just don't think I am up to the challenge of running a 5K that has lots of hills. Stacie, that is cool about Matt's grandparents. I hope they had a great time!!!

WARNING - THE REST OF THIS JOURNAL ENTRY IS NOT A HAPPY ONE. IF YOU DON'T WANT TO READ NEGATIVE STUFF, PLEASE FEEL FREE TO BAIL OUT NOW!!

Okay, so basically I am continuing to have health issues lately. I had a nasty stomach virus, followed closely by eating gluten-contaminated food accidentally (which always makes me sick for at least three days). I am angry with myself for that one - it happened because we ate out and instead of eating what I knew was safe, I decided to try something different that I "thought" was safe. Not a good idea. I have determined that experimenting in the restaurant arena is not a good idea! So I learned my lesson on that one. The problem is, my stomach is still dicey. It was not liking my "meat and vegetables" regimen, so I ate a few more carbs for a couple of days - that helped my stomach, but made my blood sugar shoot up. So there you go. I am more concerned about my blood sugar than my stomach, so I am back to eating meat and vegetables, but my stomach is giving me fits now. And on top of that, I have caught Larry's nasty cold/flu germs that he brought home earlier this week and now have a sore and scratchy throat, aching all over, yada, yada, yada. I just had a cold that turned into a sinus infection and it took me almost a month to get over that, and now I have another one. It just sucks.

The thing is, when I am sick, I can't get past it and train through it. So many of you train when you don't feel well, and I know I am running out of time, but I just can't seem to make myself get out and do it when I am hurting, running to the bathroom, etc. I am still on Week 4 of C25K (have done two days of it in the last week), but if I keep getting sick I am not sure I will be able to get through it. This 5K in May is beginning to feel like an obstacle I have to overcome instead of a positive fitness goal, and I am unhappy with that feeling. I don't want to quit - I am too stubborn for that - but I am very discouraged today. I feel like every time I try to move forward with this new chapter in my life, I get tugged back by illness. And I don't know what to do to boost my immunity. I take the supplements my doctor recommends, but if I need to add to those, I don't know what to add. How do I repel stomach bugs and cold/flu bugs at the same time? And I must also admit that getting up at 5:00 a.m. on mornings when I am feeling so unwell is starting to not happen. I find I am giving in to my exhaustion and going back to bed until closer to 6:00, when I have to get up and drag to work. I have already chewed through 2/3 of my sick time for the year, and it's only February 15. The situation is just not good, and I don't know what to do about it!

I did decide that when it comes to my normal work-out schedule, I need to have my rest day be Thursday and work out the other six days of the week. I am trying to get to Discover Mills on Sunday afternoons to work on the distance walking, so Sunday no longer works as a rest day for me. I am up late on Wednesday nights for a Bible study meeting, and by the time I get home, unwind a bit and get to bed, I really need another few minutes of sleep the next morning instead of getting up at 5. So if I can ever get past all this illness, that is what I am planning to do. I am beginning to wonder, though, if maybe the damage I have sustained from my chronic health problems through the years is too much to undo. Maybe I'm always going to be susceptible to whatever germs are going around. Maybe I'm never going to be able to consistently train for anything physical. Maybe I'm always going to be a very fat, constantly sick, almost always exhausted person who never gets to experience what it's like to live a normal, active life. I don't know - I just know that today I am discouraged and tired of fighting.

I have also decided that I don't want to use my journal to list my food, water and exercise. I will do that elsewhere from now on, because I feel like it disrupts the continuity of my journal and sometimes I like to go back and re-read it to remind myself of why I am no farther along this path than I am. Plus I am really bored with my food choices, but don't know how to add any variety because I am so restricted with what I can eat. Not only do I have to avoid gluten and dairy, but I have to avoid all high carbohydrate foods, too, so I eat meat and vegetables - meat and vegetables - meat and vegetables. I am really sick of meat and vegetables, but there's no help for it. There just isn't anything else to be done. Even when I search on-line for low-carb recipes, they almost always use loads of dairy products so I can't have them, either. If I find a good gluten-free cookbook, it uses loads of dairy. If I find a good dairy-free cookbook, it uses gluten. If I find an appealing recipe that is GFCF (gluten and dairy free), it uses lots of high carb items. It is almost impossible now for me to try to plan meals or come up with something that doesn't bore me to tears. It just plain sucks.

And it also occurred to me recently that when I started this journal, last September, I weighed 326 pounds. I hurt my back, didn't exercise or stick to my eating plan well for about three months, and started again at 331 pounds. This week when I weighed for BL challenge, I weighed 323.4. I haven't even lost 10 pounds in all this time! I realize that I am doing this for more than weight loss, but it seems like after all this effort I should have more to show for it than I do on the scale.

And what bothers me the most is that I did feel well - really well - for a few days there. And it is too cruel that I had that feeling and now it's gone and I don't know if it will ever come back.

Larry and I were talking some time ago about what we want to do for our 25th anniversary, which is in April of next year. We decided we want to do an Adventures by Disney trip out to California to see Hollywood and Disneyland, with back stage access to parts of the Disneyland parks. I was really excited about it, because I have never been to California, and I thought it would give me several months to lose weight so I can fit into the airplane seat more easily and work up my exercise tolerance so I can do all the walking that trip will entail. Now I'm wondering if I will be up to it or if maybe that whole plan is unrealistic. Especially after I came home from the last run I did and was in so much pain and so winded that he said "You need to give this up - you're killing yourself. It's just too much for you." I don't know - today I am really wondering if he is right.

 

[AmyBeth68]

Susan, I'm so sorry you've had such a rough time lately! You were trying so hard and doing so well...what a shame that you've had this illness. Just focus now on getting yourself healthy again, don't make any decisions yet on the exercise. It's a tough road...and you're the one that has to face it....so I won't say what you should or shouldn't do. No matter what you decide, we'll all be here to support you. But if you can...read back a page or two in your journal and see how excited you were. That might help remind you of the days when you were feeling so much better!

I hope things turn around for you soon sweetie. You don't deserve any more obstacles. One day at a time...one step at a time. Hang in there and have a good weekend!

 

[ScoJo15]

Hey Susan...

Hang in there.

Your road to your goal is definitely a challenging one, that goes without saying. But the Susan that I know does not give up in the face of adversity. If you want this bad enough, then it's time to dig in and not let the obstacles and setbacks bring you down.

It's great to see you are able to express how you feel and all of your feelings are certainly legitimate. Like Amy said, we'd support any decision that you make....but I feel that you are heading down the right path with incorporating exercise into your routine.

I understand how frustrated you are with the meat and vegetable deal, I know I would be too. Do you have access to a nutritionist or someone who could help you with coming up with some kind of variety in your diet?

Just try to hang in there Susan...we're all here to support you in any way that we can. Keep us updated please on your progress.

Try to have a nice weekend...and smile, would ya'?

 

[postesf]

HI Chick! I'm so sorry things seem so discouraging right now... I know it can be hard.

Don't give up though. You can do this!!! If you feel the C25K is too hard right now for you, don't do it. The goal right now is to be active and complete the 5K in it's alloted time. You CAN do that! If the jogging is too much, walk. Work on your walking pace. You can totally do this!

Chin up! I have faith in you!!!

Stacie

 

[momof2minnies]

Hi Susan,
Don't let this set back through a wrench in everything you have done so far.Maybe the pounds have not come off as quickly as you would like them to but reading your journal you could feel the exhiliration you were experiencing just by reading.

I know the stomach issues are the pits.Have you seen an allergist who deals with food allergies?

It sounds like the 5K is getting you anxious,take it one day at a time and don't fret about May yet.

As someone said before if jogging is too much right now just walk.If we don't do our "normal" cardio in 7 days there is a drop in cardiac/pulmonary effectiveness.Less circulaiting blood volume already so don't be so hard on yourself, it happens.

Cheer up,we are here, just keep posting and take it a day at a time,
Linda

 

[larry's girl]

Thanks to all of you for your kind words and encouragement. I was having a really bad day Friday and it kind of all came pouring out at once, so I appreciate the support and feedback from all of you.

I have spent the last three days getting lots of extra rest and trying to feel better with this cold I have. It is better - not totally gone, but a little better. I am still really tired and needing extra rest time, but hopefully by the end of the week I will be over the worst of it. During my long weekend, I thought long and hard about what I want to do with this lifestyle change. I am not going to quit, because I know the exercise is good for me and the dietary changes are helping. However, I think I bit off more than I could chew going into this. I started off too hard and too fast, and now I'm paying for it with these pesky illnesses. I have to remember that the damage from the celiac disease is still not completely repaired - I am still at least another year away from being totally recovered from it. So I am going to give myself a break, make some changes to my regimen based on how I feel and see what happens. First, I am going to scale back the exercise from six days a week to four - three days of training (with a rest day in between each one) and a longer distance walk on Sunday. Getting up at 5:00 a.m. five days a week and not getting back to bed until 10:00 or 11:00 each night is just not enough rest for me, so I am going to stay in bed until 6:00 on the days that I don't work out and sleep until about 7:30 on Saturday and Sunday unless I am ill (which is the latest I can "sleep in" and still meet my weekend obligations). I have also decided that the jogging is just too much pounding on my joints right now. When I come home from doing a C25K workout, my legs and hips are throbbing. And they continue to hurt through the day and into the night, which interferes with my sleep. So, in addition to scaling back the number of work outs I do each week, I am going to stop jogging and start my own version of power walking. I can't do the "official" power walking because I can't get the stride right, so I am just going to warm up and then walk as quickly as I can for the 30 minute interval I have available to me on the three "work out" days. Then on Sunday afternoons, while Larry is sleeping, I am going out to the mall to do the longer "distance" walk. The goal there is to eventually be able to do three laps around the mall (approximately 3 miles) in 45 minutes. I confess I am still concerned about being able to do the 5K in May in the allotted time frame, but I have decided that it will do no one, least of all me, any good to train too hard and end up injured or chronically exhausted and sick. So I am just going to give it my best shot. I don't want to get swept, but if I do, it won't be the end of the world. At least I will have given it my best effort, and I will be with my family and friends during the attempt, so it will be okay no matter what happens. When I told Larry what I had decided about my exercise routine, he said that was really what he was saying when he said this was too much for me - not that I should quit altogether, but just that I should scale back to a pace and frequency that is right for me. So it's nice to know I didn't lose his support, and he is happy with my decision!

I have also recently realized that I have a bad habit of comparing myself negatively to other people who appear to be dealing with circumstances similar to mine, and then I feel bad when I can't do what they are doing. This is true in lots of areas of my life, not just exercise and weight loss, and I have decided that it is time to change my mindset and stop comparing myself to others. I don't need to waste my time and energy trying to measure up to what my perception of other people is. I just have to set my goals and measure up to them as best I can. The people who I have always envied - the ones who always have a clean house, are always organized and on top of everything, are always getting everything that needs to be done taken care of - are no longer my concern. For starters, no one is perfect - so even if it appears that way to me, it really isn't that way for them. Secondly, no two people are alike. I have pretty much been behind the eight ball with my health from the very beginning, and now that I know that, I have begun to understand that I haven't done so badly. It's a good bet that some of those people I have always aspired to be like would not have done as well if they had been battling chronic illness for years - but even that really isn't the point. The point is that I have to accept my limitations without allowing them to weigh me down. I have to do the best I can with the hand I have been dealt. And I have to learn to be happy with my own progress, without qualifying it by comparing it to what others are doing. I don't intend to use my health problems as an excuse to do nothing - I intend to find a reasonable way to move more and eat right, slowly adding in longer and/or more frequent work outs when I feel able, and then assessing how my body feels each time I add in more exercise. It will be a slow, but hopefully steady, progression for me and I will learn to be okay with moving forward slowly and not attempting to measure my success by comparing myself to others.

As for my dietary changes, I do have the name of a nutritionist who specializes in the needs of celiac patients, but I am hoping to spare myself that expense if I can. So I have decided to add in some low GI fruit to my meals and assess how that impacts my blood sugar. Hopefully it won't have a huge effect and I can get some variety into my meals that way. Also, I am going to have one meal a week (probably on Friday or Saturday night) where I eat a small portion of carbohydrate as part of the meal - some rice, a small potato, some gluten-free pasta, a few tortilla chips if we eat out at a Mexican restaurant - that sort of thing, since I don't think one meal a week will affect the overall blood sugar picture and it will help me get through the "baked chicken with broccoli and green beans" meals a little better, knowing that I will have something different on the weekend. I am going to continue monitoring my blood sugar to see what the numbers look like and if I see spikes, then I may have to bite the bullet and consult a nutritionist. But I am going to try it on my own first to see how it works out.

The last tweak I am going to make involves the scale. I find that my weight fluctuates based on what is happening with me that particular day. Some days I can weigh, after having a great week, and find I have gained weight. Other days (like today), I can weigh after having a not-so-great week and find I have lost. It is discouraging to feel that your efforts are not paying off when you have a gain, so I have decided that once this Biggest Loser challenge is done, I am going to stop weighing once a week and begin checking my weight once a month. I think this will help me focus on other areas (like my blood sugar levels, increasing my stamina and endurance when I exercise, a better energy level and feeling well overall) to measure success instead of just the numbers on the scale. My doctor told me at my last visit that she suspects I have thyroid issues, as many celiac patients do. She did some blood work and we will discuss that when I go back for a follow up. If she is correct, I will have to take medication for that - and that will have an impact on my weight, also. So I am still hoping for loads of weight to come off, but I don't think I can continue to quantify my success in terms of what the scale says - it is too easy for me to get discouraged if it doesn't say what I want it to!

Wow, that was a book, huh? Sorry for the length, but this is a time of change (and hopefully growth) for me, and I wanted to write it all out so I can look back later and see how far I've come (I hope). Thanks again to all of you for listening and taking the time to help me see the big picture. Have a great day!

Susan

 

[toystoryduo]

Susan,

I wish I lived closer to you so I could give you a hug. You are such an inspiration to me. Getting healthy is about so much more than what the number says on the scale. It's about all around health: physical, mental, emotional, and spiritual. I love reading your posts because they are so insightful and address all of those areas that I mentioned above. Thank you for sharing your journey with us, Susan.

I think that the changes you are making are good ones. You definitely CAN accomplish each and every one of them!

Hope you continue to feel better, WISH sis. Have a good week!

 

[AmyBeth68]

It sounds to me, Susan dear, like you have really brought yourself to a good place. I love how you've really taken the time to assess your situation and move forward in a way that is right for YOU and makes sense based on your own needs and challenges. And yet still....you are moving forward with that determination that I soooo adore!

When you take control of your situation..and become your own best advocate (as you have here) success is certain. Some weeks will be better than others..but I still have no doubt that you will continue to be a warrior for your own health and quality of life. I really applaud you Susan!!! Thanks for sharing your journey with us!

 

[momof2minnies]

Susan,
I hear all that positive talk in your post and I am very excited for you.I am glad you are moving forward, this will not bring you down.Kudos to Larry too for continuing to support you.

Have a great week,
Linda

 

[postesf]

Yay! So glad you are in a better place now. I am 100% Confident that you can do this!!!

 

[larry's girl]

Thanks everyone, as always, for your support and encouragement.

Feeling really lousy today - this cold is truly kicking my butt. I am taking over-the-counter stuff, hoping I don't end up back in the Urgent Care for antibiotics again. Trying to muddle through work so I don't COMPLETELY use up my sick time for the year before we are even through the first two months of it, but really feeling rotten. Here's hoping I will feel better by the end of the week.

Hope everyone has a good day!

Susan

 

[MIdanceMom]

Susan,

First, thank you. Your support has helped me a great deal. I am truly blessed to have you in my life.

I am sorry that you are feeling so lousy. I think you are a very wise woman. You sat down and thought about your healthy. You are absolutely right. You need additional rest, so giving your body the rest it needs will help you to fight all the viruses ciculating. Good for you, focusing on power walking instead of jogging. I am another person who cannot take the impact of running. We all need to know our limitations, and work within those things. You will get great results with the walking, without the pain.

Before I got to the end of your post where your were talking about being frustrated with the lack of results, I kept thinking about everything you HAVE accomplished. I was so happy to read on, and see that you had changed your focus to controlling your diet, and blood sugar. Those are major accomplishments, and you should be very proud of yourself.

As for being bored with your food, let me think on that for a couple of days. Have you tried stirfries? You can get a good wok pan for about $20. Rather than noodles or rice, I frequently add shredded cabbage for bulk. You can play with the veggie combos. Kate loves water chestnuts, bamboo shoots, onion, pea pods, broccoli, shredded carrot, and baby corn in her stir fries. It is also pretty quick. Just a thought.

Feel better soon.

Beth

 

[toystoryduo]

Hope you're feeling better soon, Susan. Take good care of you!

 

[momof2minnies]

Hi Susan,
I need your help.I have a friend who has been having stomach issues for a long time.She has also been dx with diabetes,is irritable,and fatigued.They labeled it irritable bowel but I know that is miss dx alot.

She has gone around and around about these issues and I cannot believe not one MD questioned a food allergy.It sounds to me like celiac from what she said.

In a nutshell what were your symptoms(I know not everyone is alike)?How were you tested?

I went on line and googled it for her,tons of info but I thought I would ask you too.Any help you could give me would be great.

She keeps switching meds because she thinks that is it but she has had these issues long before the meds.She is in a continuous circle with MDs with various symptoms.She needs to get off the merry go round and deal with the actual reason(I believe is celiac).

Where did you get your diet info?

Thanks so much,
Linda

 

[larry's girl]

Hi, guys. Just stopping in briefly to let you know that I did end up back in Urgent Care this weekend and I have the flu, plus another sinus infection on top of it. I am up taking more cough medicine and ibuprofen for the body aches and headache, so I thought I would let all of you know that I am still here, but REALLY sick. The doctor said to drink lots of fluids, get plenty of rest and be careful, because people still die from the flu (lovely thought, huh?) - so I am staying home from work today (Monday) to try to speed my recovery. Thanks to all of you for your kind words. I will check in again when I am feeling a little better.

Linda, I will answer your questions when I am feeling up to typing a bit longer.

Hope all of you have a good week!

Susan

 

[postesf]

The flu??? and sinus infection! Oh my goodness!!!

Feel better soon! Wishing you a speedy recovery!

Stacie

 

[AmyBeth68]

OMG Susan....what a battle you've had with sickness lately. Just rest and get your strength back...the flu has been really vicious this year and it will take you some time to get the energy levels back. Don't push too much too soon. Sending you some get well PD!!!!!

 

[toystoryduo]

Susan,

I hope you're feeling better soon. Take it easy and get plenty of rest.

 

[MIdanceMom]

Susan,

The strain that is going around is nasty. Take good care of yourself. Get lots of rest. We'll still be here when you feel better.


Beth