Time to sleep.
I can’t stop thinking of how scared I am. Scared to set foot in a hospital again. They sure did a number on me. I remember times in the past thinking the care was so bad that this must be punishment for having done something horrible.
Imagine care based on love. What a concept.
I love my little dog, Puzzle. She is a healing dog. I had heard that dogs are healers but had never really thought I’d be so blessed, but she continues to amaze me.
A year ago tomorrow she got her papers to become my service animal. I had thought her role would be more like “psychiatric service dog” but in fact, what she’s been doing for me lately has been helping many of my body’s systems as well. Actually, I need her right now so much and I am so happy that she is laying beside me and I beside her.
She healed what’s known as “slowed peristalsis” that I had had for a long time. This was maybe a year ago. It came as a pleasant surprise and this stomach ailment that in fact can go on for years immediately stopped. Slowed peristalsis, in my case, happened because I didn’t eat enough.
She proved herself amazing time after time. I think three times she let me know that I was seriously dehydrated. She detected it in me and gave me a signal. The first time, I had no clue what the signal meant and I ignored it. I fainted a day later in the bathroom. But after that, when she signaled me that I was dehydrated, I took action.
Generally, she knows what to do and how she can best help me. Now, I have to spend so much time in reclined position that I must say, having her beside me has given us both a chance at having contact through touch that we’d normally not have. This dog is a blessing.
She has helped me with the edema I have had. I still have it and it’s bad, but it’s rather amazing that she has at least helped to reduce it. I had it from my bra line down. Puzzle certainly helps it. By choice she lies across my thighs to reduce the edema in that area. She sometimes lies with just her head across my thighs instead of her whole body.
Last night I awoke and found her pawing at me at an area she’s never paid attention to before. Oh, I’m sure she has but this was so noticeable and obvious to me that I’ve decided I need to ask when this part of me will be checked again for any problems.
What a blessing to have my Puzzle in my life. I wish I could snap a photo for you but she’s busy right now doing something incredible. She’s helping me.
Have a nice day and love your animal friend.
I’m going to quit worrying about “dietary limitations” right now. In fact, I’m going to focus on what I can still eat and enjoy, and quit worrying about what I am going to have to put limits on.
You know something? Our bodies are amazing. I cannot stress this enough. There’s a list of foods that are actually not only “okay to eat” on the kidney diet, but in fact are encouraged as good for you.
I am amazed that my body has been gravitating toward these foods anyway, not all of them, but a few.
Here’s a list I found of “top 15 foods.” This is a list I found at DaVita.com and the article I found is written by a kidney dietician, that is, a dietician specifically trained to help people choose good foods if they are on the “renal diet.” (There are letters for the diet, three initials, but I forget what they are.) This is what my doctor wants me on but she said there will be modifications based on what the kidney specialist says. Right now, my doctor says, I should just plain relax and not stress over it.
On the renal diet you are asked to limit sodium, potassium, phosphorus, protein, and fluids.
Given my own personal situation as having formerly been given lithium carbonate and the resulting fact that my urine output is much higher than the average person’s, it’s doubtful that I will have to limit fluids. In the hospital they said I shouldn’t, in fact. They were measuring input/output like crazy and this became quite clear. They said to go by thirst signals and that for now, my thirst signals were telling me the right thing to do.
Hey, that’s about what I’ve been doing the past 30 years without even realizing it. I get thirsty and so I drink water.
My instincts tell me that water is an excellent thirst quencher and also my thirst signals can most accurately tell me what to drink if I don’t drink anything with flavor that will influence my body’s signals to drink the right amount. I’ve kind of always known this. It’s one of those things you find out after living with “lithium-induced thirst” for decades. I never realized until a year ago when someone actually explained it all to me that the thirst came from peeing too much (volume-wise) but that in fact sure makes sense to me.
Anyway, back to the other components of the renal diet. Limiting sodium is easy enough but potassium and phosphorus? I had been concerned about the limited choices of veggies and fruits that will now be okay for me, but am much relieved that I don’t have to eat zero veggies or get bored with limited veggie choice.
Anyway, here’s that list i promised:
1. Red Bell Peppers
12. Red grapes
13. Egg whites
15. Olive oil
Here’s the list again, with my commentary:
1. Red bell peppers….I am so happy that I can eat these. When I was in the hospital the kitchen wouldn’t allow me to order the dishes that had peppers in them so I assumed peppers weren’t allowed. I’m so relieved. The red ones are my favorite. Not only that, bell peppers are good for Puzzle, too. I can often get them cheaply, even the red type. They are good for cooking or just munched on raw or in a salad.
2 & 3…Cabbage and Cauliflower…cabbage is so inexpensive. Cauliflower is not but sometimes I can get it cheaply. I cannot really keep large quantities of these at home because I find them both very addicting, especially cabbage but to some extent cauliflower as well. I’m not going to go out and buy a head of cabbage only to find myself eating the entire head in one sitting. I have no clue why this is.
4 % 5. Garlic and onions…guess what I’ve been enjoying lately anyway? I was so thrilled to get out of the hospital and cook with garlic and onions again.
6. Apples…again, these can be bought cheaply if you look around. Apples are easy to eat and can also be cooked. I can’t bite into an apple without getting the juice all over my face, down my shirt, and have trouble with my teeth, so I use a knife and cut the apple into bite-sized chunks and then eat it. They transport well, too.
7. Cranberries. I dislike cranberry sauce and don’t drink juice of any sort, however I would eat dry, unsweetened cranberries or I suppose raw ones, too, which I did as a child during the Sukkot holiday. We’d make necklaces out of cranberries and I guess I’d munch on my necklace sometimes. I think there’s a bit of a problem of the juice potentially staining one’s clothing and I’m really not sure if it washes out. I hesitate to eat dry fruit but dry cranberries that are unsweetened and not mixed with raisins and aren’t loaded with additives I would feel okay about. I am not sure about the expense and I’m not sure, if these are too expensive to buy, if they will be worth it anyway. I’ve tried homemade cranberry sauce and I don’t like it any better than the stuff you get out of a can. I don’t see any reason to eat it, really, if I dislike it. I would consider cranberries as a good choice if I had a UTI or if these were recommended specifically. I have never had a UTI. Puzzle is just getting over one but I’m not Puzzle and she’s a dog and I’ll betcha anything the last thing she’s gonna eat are cranberries.
8 & 9 – blueberries and raspberries…again, these are awfully expensive.
10. Strawberries…I can get fresh strawberries even on my budget, but not all the time, just when I luck out. I hope to enjoy these more in the future.
11. Cherries…I don’t eat them because they stain my clothes, and I’m such a klutz with them. I’m not crazy about cherries enough to pay for them.
12. Red Grapes…specifically red, the article said. I can do this.
13. Egg whites…what about the yolk? Why only the white? I need to find out. Maybe this only applies to folks that can’t have the yolk for other reasons, but I should ask if there’s something in the yolks that I myself shouldn’t have. Prior to all this, I was told by everyone I consulted that there was no reason to limit the number of egg yolks I ate. Eggs are cheap and I often find them at food pantries. The cheapest are fresh whole eggs. Egg whites that come in cartons are far more expensive.
For me, the easiest way to separate an egg is to hard boil it and then remove the yolk and set it aside. I’ve taught myself a very nice way to boil eggs in my own kitchen that I can share here:
My problem was always that the eggs cracked while I was cooking them. This can be avoided and you don’t have to resort to doing anything super fancy or buying any sort of special equipment or cooking eggs in the microwave.
This is what you do:
You know those veggies steamers? The ones that are the folding type, the metal ones? I’ll bet you’ve got one lying around already. Place two eggs inside the veggie steamer and then close the folding part around the eggs. Now, place the steamer inside a pot of boiling water for the usual time. I boil the water, and once it reaches boiling, start a timer and let the timer run 11 minutes. Please, please never forget that your eggs are boiling and don’t leave the house with them boiling and don’t go take a shower. You’re bound to forget and then be sorry. I wouldn’t place a metal steamer inside a teflon-coated pot, nor would I boil eggs in anything teflon anyway. Guess what else? These metal steamers fit very nicely inside my hot pot. Just be sure the inside isn’t teflon, which will scratch off when the steamer touches it. I think it has to be the right size hot pot and some are too small. The one I bought at Walgreen’s is perfect for a metal veggie steamer. However, I must remember that it doesn’t have auto shut off and it’s essential that I set the timer so I’ll never leave the thing running. I don’t want to burn down my home.
14. Fish. I don’t make a habit of eating it due to the expense. I have a few things to say about fish but will wait before mentioning all that.
15. Olive oil…I’ve been using it all along anyway. The article suggests a quality olive oil, not a cheapo one. Virgin or extra virgin, that is. I doubt “olive oil style PAM spray” is going to count. That spray stuff is disgusting anyway.
I’ll see ya.
Here’s the link, with a warning that this is not the most “uplifting” reading:
I had never been to the site before, though quite some time ago, I signed the associated petition. Until now, I hadn’t realized that this “research study” that Markingson was in was using the drug Quetiapine, which is Seroquel, oh lovely Seroquel.
Seroquel is an antipsychotic drug. I took it and bad things happened to me. Not as bad as what happened to Markingson. I am alive and Markingson suffered a torturous death by his own hand.
The case is ongoing and of course loaded loaded loaded with legal complications. It’s not the easiest thing to go up against a major university and a very wealthy drug company and their legal appointees.
I don’t for one minute suggest that anyone stop taking their psych meds based on any of this or not enroll in a study based on what happened to one man. Even if the drug is Seroquel. If it’s working well for you and you are okay with the side effects and you are taking it by informed consent, then I don’t see one case in Minnesota as a reason to stop the drug, nor would I suggest that you stop this drug based on anything I myself have been through.
However, as in use of any chemical intervention, please proceed with caution. These drugs are nothing to be messed with.
Never rely solely on others to advocate for you. You are always your own best advocate because when push comes to shove, each of us is alone in this world and we are responsible for fending for ourselves if we can at all expect ourselves to be adults in life.
Learn self-advocacy. Learn it well.
I am aware of the danger of my writing about this and working myself into a tizzy, so to avoid having this happen, I’ve put in some safeguards. For one, I set a timer to remind myself that’s it’s fine to write about this but I’m time-limiting my writing and will stop when the buzzer rings.
The only reason I’m sharing this at all is that I feel that in doing so, it will help others in a similar situation. Someone recently conveyed to me that the “middleman” situation is one of those universal hassles when it comes to communication.
So, based on the fact that this is universal to a large extent, let me begin.
Say you are phoning a professional. A doctor or lawyer maybe or your dentist or your childcare worker. Just about anyone, if they are conveying information that is at all important or crucial, would be better off not using a “middleman,” that is, a secretary of sorts, relaying the information back and forth between you and that professional.
However, the “middlemen” are there to weed out calls and deflect them and resolve any situation that can be resolved. They’re only doing their job. The professional, after all, has limited time and these “middlemen” can answer many questions.
If you are going to say, “I’m going to be late getting my child to school,” you don’t need to speak with the child’s teacher. You can leave the message with the secretary who can then notify the teacher.
However, if it’s a sensitive bit about your child, would you want it handled by a “middleman”? Someone who doesn’t even know your child? Someone who may miss important points and not ask for the crucial details, simply because this “middleman” has no clue about anything to do with your child?
Would you want your child put at such risk?
So that’s about my situation.
I need to give my doctor information directly. It is essential that i convey the information directly to her. If I tell the “middleman,” the information will not get through to my doctor.
The “middleman” knows nothing about me nor does the “middleman” know anything about what I am going to tell the doctor. However, the doctor and I have discussed this in brief and she will know
What to do from here
How we are going to proceed
What immediate actions need to take place and by whom
She will see to it that certain things take place sooner rather than laterShe will be better informed should there be further complications
I will have better care and a better chance of staying healthy rather than losing my kidneys or worse.
So, it’s for self-preservation that I do all this.
You deserve to have a conversation with your doctor without the “middleman” step if you feel it’s extremely important and you are the judge of how important it is, not the “middleman” who doesn’t know you for a hole in the wall.
There are a zillion very very nice secretaries at this place. I finally got one who saw my point and said, “Yes, Julie, I’ve seen to it that the doctor will phone you by x time, that’s when she sees her last patient.”
Not only that, the secretary gave me her first name. L, God bless you. Offices need more folks like you working the phones. Whatever possessed you to see the importance of my call is none of my business, however, you are doing your job, and doing it well. Please go home and have a nice evening. It’s not necessary to know that you very well may have provided for me something life saving, by bowing out, taking the “middleman” role out, and cutting out that gap in communication.
I had a blood test yesterday. It was great being able to view the results just a few minutes ago.
The numbers, trust me, for my kidney levels, indicate that the news is bad news, however, I am relieved to have an answer.
I feel sad, but I know now, and knowing is a relief to me.
I do know that considering all factors, I am not in a medically safe situation. I’m doing great psychologically and handling “feelings” fine. My body is not in good shape and this frightens me.
One of my biggest worries needs to be addressed immediately with my primary care doc. Fortunately, I had put in a call to her anyway, so I can bring this up right away with her.
Dealing with “worry”? That’s easy. I busied myself neatening up my apartment. This has helped because now it is far less cluttered. I couldn’t stand the clutter and this is down to a tolerable level. That plus busying myself with “housework” was calming.
I need to take a shower in record time. Can I do this? Watch me. With my new “fed brain,” I can do lots more than I used to be able to do.
I enjoyed seeing a fine example of “doctor” when I met with my own PCP yesterday. She’s a rare gem I need to hang onto. I need examples of “kind doctor” to eliminate my new fear of doctors and nurses. Yes, I am well aware that the fear is exaggerated and unrealistic and I guess also a generalization where there shouldn’t be one.
I have developed this fear as a natural response to having been poorly treated by a handful of very disrespectful nurses. Their treatment of me was exceptionally unkind. A few of the docs were also disrespectful. So I need examples of “kind doctor” to help me get over this fear.
I’m really not scared of cops anymore. Sometimes, I feel a little flinch inside me when I see one, but that’s all that’s left of that.
It’s not anxiety or paranoia, just one of those associations people naturally develop from a bad memory, trauma, or experience. These things fade in time usually.
I’ll keep you posted.
Range of emotion. Not mood. My mood is fine. I feel stuff. If I felt nothing at all, there would be reason to be concerned. If lacked the capacity for emotion including deep emotion, this would be concerning. I am happy to say that I am rather human like the rest of you.
Good morning. You may find this You-Tube tough to watch. Just thought I’d give you a heads-up. it’s just me talking. That’s all that’s in it.
I’m rather candid and open about a rather beautiful event in my life. I do see this as beauty.
This is all new to me, new material, everything.
You will see why I’ve had the need to know stuff and learn stuff about my experience and why the questioning.
I feel satisfied and happy today.
It doesn’t surprise me that now that I’ve expressed what I’m thinking, I have no need to “discuss it in therapy.” It’s not a therapy concern.
As I said, I believe in myself.
I believe in myself.
I believe in myself and what I have perceived. Not much else matters. I am stronger today because of the experience and I feel no need to prove my strength to anyone. I believe in myself and I did not believe in myself before.
Have a nice day.
Wow, it sure felt good to cry. I feel fine now.
Naw, I didn’t need a pill for it, just tears. I’m okay, lots better.
When the air conditioner is broken and stressing you out, do you take a pill for the stress? Naw, you get the AC fixed.
So, I’m fixing it as we speak.
I made the first step already and am continuing to work on it.
The You-Tube should be ready soon, then I’m going to make supper. I feel good.