The last couple of days have been filled with accomplishments.
The biggest one first. Yesterday I didn’t have to take Valium or Phenergan all day long. (I did take it once today, but only once, I’m not positive I needed them, but I was starting to feel a little dizzy and better safe than sorry.) That’s a huge improvement.
I made dinner last night. To read all about what I made, check out my blog post on Wendy Cooks. (a little teaser here: it includes Acorn Squash and wild rice.)
I cleaned up the kitchen today.
I completed messed up the kitchen again today.
I made experimented with dinner again, and made something that I was very pleased with. I will post about it on Wendy Cooks tomorrow. (Yes, I made Pesto out of Kale! can you believe? I served it over penne pasta and grilled chicken…you must see the photos, I promise I will post them tomorrow.)
Stuart talked to Dr. Gray today, and she is setting up an appointment for me to come and have another lumbar puncture (also known as a spinal tap.) She mentioned that my pressure may still be a little high, but the Diamox is just too strong and they might put me on Topamax instead. Stuart mentioned that my psychiatrist just put me on Topamax, and she thought it was interesting that within the past few days I’ve started feeling better. They are now taking me off of the diuretic that I’ve been on from Dr. Kaylie. (I feel like such a trial and error patient….let’s see if this works…nope? well how about this?…a little…well how about this….) I guess we’ll see what the lumbar puncture says.
When I look at my little list it doesn’t look like I really got all that much accomplished, but I really do feel like I got a lot done. I didn’t have to lie still on the couch pumping in drugs praying not to throw up. I even let the dog out a few times and didn’t have to call Stuart down from work to do it.
Oh, and we had another winter storm here last night.
This winter has been very unusual here in Durham, NC. It’s never this white.
Patients for a Moment is a patient-centric blog carnival revolving around those living with chronic illness. Twice a month, bloggers are encouraged to tackle the theme with their own unique voice and situation. Those effected by chronic illness – doctors, caregivers, friends and family members are also thoroughly encouraged to participate!
This month Glass of Win is hosting and her theme is :GUILT.
You feel it, though you know you shouldn’t. In what ways, if any, does guilt come into play in regards to your illness and the way you must live your life? How do you try to overcome feelings of guilt?
One of the definitions Wikapedia gives for Guilt is: a cognitive or an emotional experience that occurs when a person realises or believes–accurately or not–that they have violated a moral standard, and bear sole responsibility for that violation. It is closely related to the concept of remorse.
The definition that Webster’s gives that I think fits most here is: feelings of culpability especially for imagined offenses or from a sense of inadequacy : self-reproach
My disability is pretty hard to deal with sometimes, but the guilt that I carry around because of it is stifling. Most of my disability is invisible, and that makes it harder, but I don’t think it makes it less real. What makes it most difficult for me is being such a burden.
Yes, as the definition points out, I realize this guilt is mostly for imagined offenses, but it is very real to me.
I have this weight that is just bearing down on me every day when I think of how much I can’t do that my husband must now be burdened with. Most days he has to do all of the house work, he often has to take care of my personal needs, I can’t drive so he has to do all of the shopping, take me to my doctor’s appointments, pay all of the bills, plus he has a full-time job. I feel like I’m a useless husk of a human being, I can’t work, I often can’t even do for myself, what am I contributing to this life? How could I not be drowning in guilt? It is suffocating.
I used to be the friend who was there when others needed me. I would bring a friend dinner, help clean their house if they were ill, help out when they were pregnant (or right after the baby was born)….now, I can’t do any of that. I feel guilty that I often can’t even go to a friend’s birthday celebration. When my husband is sick and I can’t help him, like he has helped me so many times, the guilt is nearly over powering. (thankfully, he doesn’t get sick very often, and when he usually likes to just sleep.)
It’s funny, but one of the biggest things I feel guilty about is when I can’t cook dinner. I know my husband doesn’t like to cook. And I have celiac disease so it’s hard to eat out, plus we are trying to save money and not eat out as much. We also hate to get things to go, all that wasted garbage that they send your to go things home in, it’s just such a waste. More guilt.
I will often have a few days where I’ll feel better and I can get a few things done, and I’ll buy some groceries and start meals. Then I’ll get sicker, and some of the food will go bad, and I feel guilty about that too.
How do I handle the guilt?
I go to therapy! Actually, my husband and I go to therapy together!
My therapist keeps telling me that guilt is a useless emotion unless you are doing something that is destructive to yourself or others that needs to be stopped (like abusing drugs or alcohol, breaking the law…). Then guilt can be a good thing and help you to stop, other than that, it’s useless. I keep trying to remind myself of that. I should not feel guilty for things I can not control. I need to give myself a break, and I need to learn to ask for help.
My husband tells me how grateful he feels that he can be here to help me. That makes me feel so wonderful that I have a husband that is so selfless and loves me so much. But then I think, how many years can he put up with this? But you know, that is not for me to decide. He’s here, he loves me, he wants to help me. If he needs help with this, he needs to ask, I should not feel guilty because he doesn’t ask for help.
My friends seem to understand. Or at least they try, and the ones who don’t, well, I’m not too sure they should be my friends. I would be there for them, if they don’t understand and won’t stand by me, then maybe they aren’t the people I think they are. Some people are surprising me. There are some people who I didn’t know would step up and be my friend through this and they are there. I’m proud to say they are my friends.
I work hard when I am feeling well to make up for when I’m not. I often feel better in the morning, so I’ve started cooking a lot more in the slow cooker, I just throw things in it in the morning, and it’s done that evening. On days when I feel better I clean a little. I don’t take on a big task, but I get something done. (My husband argued with this point, but I said I’m trying to get better about this. I used to start way more than I could finish, now I try to do a little at a time, so I can feel like I accomplished something.)
I’m learning to vent more of my emotions on the computer, this blog and other people’s blogs have helped a lot, so I don’t have all this guilt building up with nowhere to go.
I’m finding other people like me who have similar feeling and we are learning together that we need to not be so hard on our selves.
Even my doctor said I need to give myself a break. This is hard. I’m working hard even when it doesn’t seem like it. I needed to step back from the situation and look at it as if I was a friend of mine and think about how I would feel about me.
I would think “Hey, she’s a pretty brave person who is doing her damnedest to make the best out of a very hard situation. I don’t want to get in the way, but I wonder if she needs help?” I know a lot of people are very busy and wouldn’t even think about helping. Others are so afraid they will be bothering you. But some people really would like to help, they just don’t know how. I need to learn how to ask for help when I need it, and not feel guilty about it. (I really hope my husband does too.)
The problem is a lot of people will say, “If there is anything I can do, just let me know.”, but they don’t really mean it. What they mean is, “If there is anything I can do that is convenient for me on that particular day and time I will be happy to do it, but other than that…..well….not so much.” Remember, when I said that I’ve found out that there are some people who probably aren’t my friends anyway….well, I don’t feel guilty about that.
There is nothing like having a camera stuck down your throat. Yes I have a sore throat now, and my tummy is not feeling great. I think they topped the gas off too. Whew!
Well, this test shows I have Acid Reflux, and a little Gastritis. (he still wants me to have the CT scan to make sure my bowels aren’t doing something funny where the cameras just don’t reach. I thought, geez, you put a camera up one way, now you’ve put a camera down the other way, you mean there is still more you can’t see?)
My official paper that he gave me says that my “Z-line is irregular, 37cm from incisors”, and I have “Gastric mucosal abnormality characterized by erythema. Biopsied.”
Ok, so I looked up with a Z-Line Irregularity means. It mainly appears to mean that it shows I have acid reflux, but I’ll know more after the biopsy. And the 37cm from incisors is just how they measure where the Z-Line starts in people (or maybe where the irregularity is). Mine is 37 cm (or 14.6 inches) from my front teeth.
The other part: “Gastric mucosa abnormality characterized by erythema.” Simply means I have a little bit of gastritis but it’s not bleeding. Erythema means that it’s read and inflamed but it turns white when you press on it, so no bleeding. (hopefully) It also sounds like I have a bit too much mucus.
He put me on Prevacid. I’ve been on this medication before, for years actually. I don’t like being on this for so long, but I’ll do it for now. He also told me to follow an anti-reflux regimen indefinitely. That should be fun.
This is the Anti-Reflux Diet:
NO:
Caffeinated Drinks
Carbonated Drinks
Greasy or Fatty Foods
Spicy Foods
Citrus fruits or juices
Tomatoes or tomato bases
Onions
Peppermint
Chocolate
Alcohol
Nicotine.
Ok, so most of these are no big deal for me, but NO TOMATOES? or even worse NO ONIONS? If you have read my recipes you will know that I cook with onion and garlic all the time!
What I can eat and drink:
water or herbal tea
Skim milk, low fat milk, low fat yogurt, low fat or fat free sour cream and cream cheese, and low fat cottage cheese (WAIT A MINUTE HERE, THEY DON’T MENTION ANY REAL CHEESE AT ALL, NOT EVEN LOW FAT CHEESE…I DON’T THINK THAT’S RIGHT.)
Any Plain raw, baked, broiled, or steamed vegetable, Except Onions and Tomatoes.
Any Plain Raw, Broiled or baked Fruit (Except Citrus)
Any Plain Baked, Broiled, Steamed lean beef, pork, chicken, poultry, or fish.
Any low fat bread or Cereal, plain rice, plain pasta (Of Course, I can only have the Gluten-Free Version of these.)
Low Fat desserts (less that 3 grams of fat per serving)
Any fat free or low fat soup without tomatoes or onions.
This is going to be a challenge. The biggest challenge will be, No tomatoes (I love a good tomato sauce, I can’t stand them raw, but I love a good sauce.) No Onions! Oh my goodness. What will I do? I found there is an Indian herb called Asafoetida that when used in cooking gives the flavor of onion and garlic. I guess I will try that. Supposedly before it is cooked it smells like stinky feet and poop…that should be interesting. Oh, and cheese, that will be hard. But I guess I can use vegan cheese. I do like the Dayia Cheese.
As I said, a challenge, especially since we have a lot of cheese in the house. 🙂 Hopefully, it will make my tummy feel better, and I can stop running to the bathroom so much. That will make it all worth it I guess.
I went to see my psychiatrist today for my normal follow-up for my bi-polar medications. I’ve been seeing the same guy for about 7 or 8 years (except for the break when we moved to California for 2 years) so he knows me pretty well. He’s a really great guy and I think a lot of him. He says I’m one of his favorite patients….I hope he doesn’t say that to everyone….I don’t think so, he always looks genuinely glad to see me. I’ve worked very hard to get my bi-polar disorder stable, and there have been times when the side effects from the medications just made it so hard. But we work together, and have found something that works (for now). Actually, I’ve been pretty stable for about 16 years now. Every once in a while my meds will need adjusting, but it’s nothing like it was.
When I went in today I wasn’t walking straight and my doctor held my arm so I could feel more steady while walking back to his office. He knows all about the Meniere’s and he so wishes he could do something to help. When I sat down, I just let it all pour out. How the blood patch gave me such hope, then it was just jerked away, how upset I am that the doctors say they can help but keep dragging their feet, how I just don’t want to get up in the morning, how the GI problems have made me gain so much weight I don’t even want to look in the mirror any more…..
He listened and tried to comfort me and when he turned to get his papers to start writing things down, I noticed he had to take off his glasses and wipe his eyes.
It has to be so hard to be a good psychiatrist or therapist, you have to really care, but you need to keep a distance or you will get swallowed up by other people’s sorrows. I love my psychiatrist, and I’m glad that he cares so much about me. I just hope at the end of the day he can leave it at the office.
I do still have hope that something can be done. I told him that too. He agrees, but it’s hard to see me this way. He asked if I wanted him to up my dosage to try to help my moods, but I told him that I felt like this depression is well justified. I only get worried when I feel like this and nothing is really going wrong in my life. He told me that I’m a smart woman, and I was right, that is the time to worry. He did add a little bit of Topamax back in my medication to try to help the migraines a little, possibly help with this crazy weight gain, and Topamax is also used to treat both the manic and depressive side of bi-polar disorder. I was on it exclusively, but it just made me so stupid. I was taking 400mg per day, now I’ll be taking 25mg twice a day. Hopefully, I won’t feel too stupid. I did tell my doctor today that right now I’d rather be stupid that fat. We got a laugh out of that, and he reminded me that I was pretty miserable being dumb. : )
Tomorrow I have an endoscope scheduled. I have to leave my house at 7:00am. (I am not a morning person!) I am not looking forward to this test. This is where they put a scope down your throat and look around at your upper GI track, including your stomach and part of your small intestines. I have 3 reasons I’m not looking forward to it…well, 4 really. 1. When I’ve been fasting, it is very hard to find a vein. So when they want to start an IV, it’s going to be very unpleasant. 2. The last time they put a tube down my throat (during an operation for breathing under anesthesia) they chipped a tooth. I really like my teeth, so that really upset me. 3. I’m going to have a very sore throat afterward. and 4. When I don’t eat regularly my stomach really starts to hurt. (of course, that’s one of the things they are trying to figure out, and why they think I may have an ulcer.)
I just want them to find something so I can stop all these tests! I’m so tired of being poked and prodded. Especially since they haven’t found anything. 5 months of running to the bathroom and gaining 35 pounds…it would seem like they could figure out what is wrong.
The more I have to see doctors, the more I realize how very little they know.
There are many things I want to accomplish during this coming year.
Of course, I want to get the Meniere’s under control.
I want to figure out what is going on with my gut and get that fixed, including taking off this weight I’ve gained.
I want to exercise more. I love to work out in a pool. I just ordered some of the equipment that we used when I had physical therapy in a pool so I could do the exercises on my own. (a flotation belt so I can exercise in the deep end without sinking, webbed gloves for resistance, and weights for my ankles to help with aqua walking and toning.)
I also ordered a heart rate monitor so I can keep up with that when I’m working out other ways. (my heart tends to beat a little too fast too soon, so I have to keep an eye on that.)
Stuart and I have decided that we want to start living more in line with our beliefs. Stop buying so much stuff we don’t need. Start buying things that are used instead of new. Stop creating so much trash. Start buying closer to home.
We are going to try very hard to not buy anything new in 2011. I’m looking at it as a smaller goal, I plan to say – Nothing new in January, then if I can do that, then Nothing new for the next 2 months, and build up. I’m afraid if I say, Nothing new for a whole year, I’m just dooming myself to failure. (of course, this doesn’t include food, necessities like soap and stuff, and we’ve agreed if we need underwear it will be bought new.) It also doesn’t include services we may need, or the raw materials I need for my art. I am trying to create recycled art, but there are still some things you just have to buy. (I’m hoping to find some of this on Craig’s list, or Free Cycle.)
I hate to admit that we did go on a spending spree at the end of the year in anticipation of this upcoming year. I’ve been wanting a new vacuum cleaner for so long, and I wasn’t going to wait another year for it!
Buying nothing new is going to be hard. But I think we can make a good go of it.
I also want to eat healthier. I need to get my cholesterol down (well my triglycerides, the rest is fine).
As most of you know I’ve taken on the challenge to make at least one meal a week from S.O.L.E. (Sustainable, Organic, Local, Ethical) ingredients. This has been a challenge during the winter months, there just isn’t that much local produce at this time of year. But I’m enjoying the challenge.
Next, I’m taking on a challenge of going Vegan or at least Vegetarian for 21 days starting January 3rd. I’ll take it one day at a time, but cutting out a substantial amount of saturated fat from my diet should lower my triglycerides.
I want to spend more time with my friends, and I want to make more friends who have the same interests I do. It’s hard for me sometimes to go to parties and see how much is being wasted, and so many people don’t bother to recycle. We are the only people in our group of friends who have a composter. I also think it’s important to use cleaning products that are safe to the environment. I feel like many of our friends do some things, but when it’s not convenient they don’t try. I feel like we’ve fallen into that trap sometimes too. For example, getting take-out. What could be more wasteful? At least when we eat at a restaurant they reuse the dishes and utensils.
We would rather spend our money on visiting friends and family. Or giving to the charities we believe in. We are tired of being wasteful.
In a nutshell what we have planned for the New Year is:
Get Healthier.
Stop being so wasteful.
Don’t buy anything new.
Make more time for our friends and family.
Are you making any resolutions or plans for the New Year? I’d love to hear about them.
Yes, I did take something. Unfortunately, it did not work.
All of us who have Meniere’s know that sleep deprivation is not a good thing. I’ve already been having signs that a big attack is probably on its way, and now I can’t sleep. Dang it.
I was in bed for a while, and I thought I was nearly asleep once, but then I got the hiccups. I get the hiccups a lot. After, they finally subsided, I couldn’t fall asleep. So finally, I just got up.
I guess I will go and try again. If I can fall asleep, I hope I just sleep the day away tomorrow. : ) Maybe I’ll feel better when I wake up. *fingers crossed here*
I woke up yesterday and my hearing was down. I thought, well, here we go again.
Today, has been a pretty bad day.
I got up, still can’t hear as well, felt off-balance; and as usual as soon as I woke up I was off to the bathroom, the diarrhea starting all ready. (I must say though that for the past couple of days things have been better on that front.) Not today.
I ate breakfast. Decided I’d look work on some photos on Photoshop. All of a sudden I had to RUN to the bathroom, and as you may have guessed, I didn’t quite make it. I’m so grossed out by this. What if I had been out in public?
Shortly after this I could feel a vertigo attack coming on. I quickly took some Valium, and Phenergan. I even decided to not wait and took a Phenergan suppository too. I tried to stay calm, but this
is driving me crazy. At least one attack per week, I just want it to end. I asked Stuart to call Dr. Kaylie’s office and tell him that I am going to kill myself if they don’t do something soon. Of course, Dr. Kaylie is out of the clinic this week. I realize that everyone deserves some time off, but why does everyone seem to think that the world stops this time of year? I am just so miserable, and all of my doctors are on vacation. *sigh* I’m sure they will take care of things as soon as they can as soon as they get back. Yes, I could see the doctor on call, but that really wouldn’t do any good. He wouldn’t be able to do a spinal tap, or set up surgery. So I wait…
After a little while the vomiting still hadn’t started, but I was still feeling very bad. We decided that I would get another suppository, and take another Valium. I usually don’t take them so close together (it was about an hour and a half since I took the first round.) But I’m glad I did. Things really started calming down. I even feel almost normal now. Thank goodness. I’m still a bit off-balance, but nothing I can’t handle.
I’m getting so tired of feeling sick and tired.
I can’t exercise. I’ve gained so much weight since this diarrhea started.
Look at these two pictures.
Taken at Christmas Party 2010Taken last year about this time.
Can you see how much weight I’ve gained? Just look at my face. I know it’s a little hard to tell in the top picture, but it’s the best one I have of me right now. I must say, I’m kind of avoiding the camera. I hate to even look in the mirror. I gained the majority of this weight in 2 months, when the diarrhea first started. 30+ pounds.
I have enough to worry about without having to worry about this too. It’s just so depressing.
Don’t worry, I haven’t given up. I do believe something can be done, but I’m just tired of waiting for that something.
I love the magic that surrounds this time of year. I wish everyone could feel it. I’ve been alone on Christmas before and it’s a very sad time.
The Spirit of Christmas to me is in the magic of Giving.
I don’t mean presents here. I mean giving something of yourself that you don’t normally think of giving. Donating to your favorite charity, having a friend over to share in your Christmas traditions, surprising someone who isn’t expecting it with just a little something.
I’m not a commercial person. I hate how Christmas has become a race to see who can get the most expensive, the greatest number of toys.
It is not the gift that counts, it is the spirit in which it is given.
Many people stress being with family on Christmas. That is very hard on people who aren’t very close to their family, or who don’t have a family.
I’m so glad that I have my very small family. Stuart and I are just so good together. Our dear dog Sandy, and our huge cat Max round out our immediate family very well. As much as my little family means to me, it is the love of my dear friends that continually surprises me. They are a gift to me.
What I really want for Christmas this year, is the ability to spend more time with my friends this coming year. Of course, that would mean that I would be feeling better, that would be very nice too. (I would like for more of my friends to understand that just because I’m having a hard time with my illness, it doesn’t mean I want to be alone all the time.)
May your Christmas be filled with magic. Make sure that the people you love know it. It’s very hard not to get so caught up with the business of the season and forget about taking time to reach out to someone in need.
Every year on Christmas Eve we watch It’s a Wonderful Life. This is a very magical movie that shows us all just how much we affect others without even knowing it. We should all try to live a good life, because we never know if what we are doing may change someone else’s life forever.
Again, have a very joyous holiday! May you all feel the magic of the season!
The Christmas Spirit has finally hit our household.
I’m feeling much better about things than I have been. Today I got so much more done than I have in so long.
But let me start over. Last night I had a complete meltdown! I hate it when that happens. It doesn’t happen often, but when it does, it’s not pretty. I feel so sorry for Stuart when I’m like that.
Now, today things look so much brighter. I seem to have a renewed sense of hope.
I got so much done today. I cooked. I vacuumed. I cleaned up the kitchen. It was wonderful! I felt so useful, and I felt like I was much more me.
Tonight we put together our Lego Christmas Train while listening to Christmas Carols. Yes, the Christmas Spirit has found its way to our house. Thank goodness!
I try so hard to believe that things will get better. I want to believe that the Meniere’s will become manageable, that I will start having normal digestion again, that I can have a life again.
A friend of mine sent me a note on Facebook that said I was her hero, because I’ve been through so much in the past couple of years and still I can be optimistic about the future. Well not today.
Today, I’m not optimistic at all. Today, I can’t see past the pain and horror that my life has become. I read on Facebook all the fun things that my friends are doing, and I’m a prisoner in my own home.
I continue to have horrible Meniere’s attacks. It just hurts too much. Not just the attacks, but the unknowing. Is it going to happen today. Is this weird feeling I’m having the beginnings of an attack. I can’t drive any more. I can’t even take care of my house. Some days I can’t even get out of bed by myself.
Then there’s the digestion problems. Today was horrible. I ate dinner, my stomach hurt a lot. I went to bathroom and nothing really happened, then I was standing at my kitchen sink and I lost control of my bowels. Yes, just standing there and Wam! I had poop running down my leg! (I can’t believe I’m actually telling anyone this.) I went upstairs, sat in the bathroom for a very long time, then took a shower and put my clothes in the washer. But during that time I had a complete melt down, and I don’t think it’s over.
I’m really tired of living like this. I’m ready to just, I don’t want to say die, but that’s really what it comes down to. I feel like I’m fighting a loosing battle. The doctors at Duke tell me there is so much they can do for the Meniere’s…so when are they going to do it? I know I just had the blood patches on November 24th, but since December 4th my life has been a living hell.
The digestive health doctors have no idea what is going on, and the last two tests I was scheduled for I had to cancel because the Meniere’s had control of my life. I have a scope planned for Wednesday, where they put a scope down your throat and have a look-see. Now if the Meniere’s will let me go through with this test, maybe they will find some answer. I have a feeling they are just going to tell me I have IBS. Something else that has no cure, that I will be stuck with for the rest of my life.
I want to have faith, and most of the time I do. I’m not religious like a lot of people, but I have my own beliefs. But that’s not the kind of faith I’m talking about. I simply feel so out of control.
All my life when things happened to me, I always knew that I could fight back and over come. But now I don’t have that. I feel like I’m fighting so hard, but I don’t have the right ammunition.
Even now I want to say, don’t worry, I’ll be fine, I’ll get through this too. I don’t want pity, and I feel like I see that in so many people’s eyes.
I can accept a lot of strife in my life. Loosing my hearing, I could deal with. Walking with a limp and living in pain, I could deal with. Not having control of my bowels, I can’t life with. Never knowing when the vertigo will hit, I can’t live with. (I used to have signals, but now the vertigo will come on so fast.) I can’t deal with feeling so out of control.
On top of everything, my dear sweet dog has bladder cancer. In July they gave her 6 months to a year. She’s still doing very well. Right now she has a staff infection, the vet says that isn’t unusual for dogs with bladder problems, but I’m afraid it’s the first of her going down hill. I’ve had my Sandy for over 16 years, I don’t know what I will do without her.
But tomorrow is another day. I’m sure things will look better after a good night’s sleep, and I will once again have my optimism back. I’m just so tired.
Picnic with Ants 