Need advice from those who are chronically ill (long)

[Hound dog]

I have chronic kidney disease.......and for the past several years have been in chronic renal failure.

I haven't read the responses (no time) but for me......having to do.....keeps me going. Being a full time student, Mom, running the house, ect doesn't give me much extra time to pay attention to my illness. Which is, I believe, a good thing.

If a person isn't careful, it's easy to get "caught up" in their chronic illness. I found that if I had too much time on my hands it was too easy to become hyper focused on my symptoms and often this results in me feeling worse. Keeping busy forces me to ignore symptoms I can push past to get on with life. A vital skill to anyone with a chronic illness in my opinion.

I was diagnosed with my kidney disease at 22. (now am 44) My goal for myself has always been to live life to the fullest I can and as "normally" as possible. You only get to go around once.

So if docs feel she ought to be able to handle school.......personally, I'd give it a shot. It never hurts to try, and you could arrange to have as many supports in place for her as possible.

Hugs

 

[hearts and roses]

Please forgive me if I'm repeating something that someone else has suggested.

Have you considered having your daughter evaluated by a Doctor of Naturopath medicine? Some insurance companies cover a portion of the costs involved and if yours doesn't, many of the doctors will work with you.

They do a complete evaluation of the patient, both externally and internally (stool samples, urinalysis, bloodwork, etc). Rather than throwing together a random combination of supplements and vitamins, they tailor the 'prescription' of supplements/vitamins/herbal remedies to the needs of the patient, thus guaranteeing that there will not be any toxic levels of any kind or contradictions between any of the supplements/vitamins.

A friend of mine whose 15dd was suffering from mysterious aches & pains, swelling and horrible digestion and headaches saw a naturopath and he was able to get her on track rather quickly without the use of any heavy duty medications. There was a dietary change as well as supplements/vitamins tailored to her specific needs (she had deficiencies in several areas).

Hugs and best of luck.

 

[Marguerite]

Something just touched on by others has reminded me of something I meant to mention - this is important. For her especially, but also for you.

Take vitamins, eat a healthy diet, get plenty of sleep but not too much, try to avoid slipping into sleeping during the day but being awake at night. If this means you have to look after your health (and she, hers) like an Olympic athlete, then so be it. But I agree, it is important to not get too self-absorbed into your own illness. it is so very easy to go round in ever diminishing circles and eventually fining going up your own read end, if you focus too much on yourself.

I've found being a parent forced me to have to cope. I have had to find other ways to do some tasks - when difficult child 3 was a baby, I had a lot of trouble holding the spoon when feeding him, so I found a way of building up the spoon handle with foam so I could manage to hold it more easily. I had more foam on the handle of my hair brush and on my toothbrush. I eventually got an electric toothbrush as a way of coping. In other words - I found ways to do it.

But do it, I had to.

And that can be the difference - a sick child often doesn't have to. But with chronic illness, ANY chronic illness, you have to change mindset away from "I'm not well, I'll go to bed until I feel better," which is what we would do for flu or the measles, and change the attitude to "I don't feel well but for me that is normal, I have to get on with life as best I can."

To "soldier on" in this way is NOT denial, nor is it pretending nothing is wrong, nor is it "pulling yourslef together". But it IS getting on with your life and not letting the disease steal away even more of your life.

Don't let the disease win. Fight back by living within your limits, but living to the full as much as possible.

A young girl I knew (classmate of easy child's) was born with spina bifida. She had a low spina bifida and when small was able to walk a little with calipers. However, as she grew and got heavier, she wasn't able to keep walking and increaisngly was in her wheelchair.
I dropped in to collect my kids from school and happened to arrive during gym class. A kid was on the balance beam and this girl was in her wheelchair right beside the balance beam, talking her friend through. "One more step, now another - you can do it, I know you can!" The girl in the wheelchair had never been able to walk on the balance beam but there was nothing wistful about her, she was urging her classmate on, mentally she was on the beam with her. The spina bifida girl really knew about struggling, about trying hard and really working at something physically, and so at tat level was really able to relate to her able-bodied classmate.

In the same way, your daughter now has an understanding of other people's struggles that other girls of her age can't understand. She has a lot about herself and her own journey through this, that is worth valuing. The disease itself - horrible. Her response to it, and her inner growth - never a waste. If nothing else she has learned about her own frailty, and also her own strength. That strength is hwat she needs to continue to learn about so that she can use it to her advantage. If/when she recovers from this, she will always have that advantage, that knowledge of her inner strength, to see her through life.

Marg

 

[Josie]

Pam, she has the best pedi LL dr. in the country, if not the world. I think you know who I mean. He is the one that said she probably wasn't able to go to school because her anxiety was too high. He thinks that her anxiety is from her Lyme and will get better with treatment. He did say on our first appointment that his patients get better in 1 - 7 years. He is supportive of her staying home and knows that it is difficult and we are not as productive as I think we should be.

With chronic Lyme, from what I understand, there are often lots of things going on such as food allergies, nutritional deficiencies, etc. I'm addressing this from whatever way I can, including Obsessive Compulsive Disorder (OCD) CBT/ERP therapy to help the Obsessive Compulsive Disorder (OCD) for whatever part this has in perpetuating this.

Before her Lyme diagnosis, she had several MRI's, and a CT scan. She has seen a 2 neurologists, psychiatrist, infection disease dr, PCP. Their approach would be to heavily medicate her with psychiatric drugs, assuming it is all in her head. Given that she had a bullseye rash (always Lyme) that went untreated (because there is "no Lyme in TX" and the PCP didn't see it and I guess didn't believe me), I am confident she has had Lyme for almost 5 years. Her symptoms, including the Obsessive Compulsive Disorder (OCD), started right after that,and even then, they said she was just anxious. I am less confident that she will get substantially better any time soon, if ever, but we are treating it, hoping for the best.

She had her neuropsychologist testing done in NYC with a Lyme Literate neuropsychologist so we did a tiny bit of sightseeing afterwards. She did feel like she wanted to go back to the hotel, but I convinced her that she would be sorry if we didn't at least ride the Staten Island Ferry to see the Statue of Liberty the first day and go to Times Square on the second. When we got back to TX, I let her rest because she had done so much more on that trip than she was used to. I can't say she was any worse than usual, because given the choice, she would almost always choose to stay in her bed. The neuropsychologist is the one that suggested she go back to school since he thought if she could do it for him, she could do it at school. I'm thinking it is an entirely different thing to do 2 days of testing one on one with someone and to go to school day after day with no real end in sight. When she did go to school, she complained that it was too loud as well as she didn't feel well.

She will go out with me to run errands when I need to and we do go out sometimes as a family but she complains if I schedule too much. When I have pushed the friends coming over, most of the time, she has this unhappy look on her face, because it is too much for her. Recently, she had a friend over and it went well and she has agreed to try to have a friend over 2x per month.

I've read a lot on the Lyme boards and a lot of them struggle with being unable to work and are housebound. It isn't that unusual there. That is where my uncertainty comes from.

 

[Josie]

JoG, I have taken her to a DO that does alternative medical care as well as traditional. He uses nutritional supplements, and homeopathic remedies. We just started with him so I am hoping he will be helpful. Is that what a Doctor of Naturopath does?

If she felt well but was disabled, I wouldn't have any trouble pushing her. I get a headache sometimes though that makes me want to quickly do what I have to and then lay down. Sometimes it is bad enough that I can't do anything except lay there. On those days, I think about my daughter and see how it must be for her. I have the advantage of knowing that my head will be better in a couple of days, though, where she knows this is still going to be there. I think I would be pretty unhapy if someone told me that I was going to have to add in going to a job 3 - 7 hours per day on those bad days. As an adult, I would do it, but I think it would my quality of life worse, not better. I wouldn't be interested in socializing but just getting done and out of there.

 

[Marguerite]

YOu do sound like you're encouraging her to push just tat little bit more, especially for a one-off activity. I'm glad she has agreed to have a friend over twice a month, too.

I want Occupational Therapist (OT) emphasise - what I say to do what you can within your limitations, I mean just that - WITHIN LIMITATIONS. Those limitations will change from day to day. A problem you can get, is to let the frustration get to you, of being angry at not having as productive a day as you wanted. But that only slows you down even more because anger is tiring. Acceptance is also important (a difficult skill for any of us, especially a teen).

With the noise factor of school - a good point. Would wearing headphones, or white-noise generator, or possibly entering/leaving at a time when the corridors aren't full of noisy kids, be a possibility? We had to make similar precautions at school for difficult child 3, because he would find the noise a really big deal. He had a CD player with headphones, we chose the music carefully to be stimulating but not distracting, but to also drown out the student noise problems. We also ensured he had somewhere at school he could go, to get away from the bustle when he needed to concentrate better.

It really does sound like full-time attendance could be too much for her right now, although if she wants to try it I would let her but put in the "escape clauses" where you can (nurse's station for respite, leave/arrive during quieter times, partial attendance, half-time workload, headphones/sunglasses etc).

Anything she can do, even for a little while, is a bonus.

Marg

 

[SRL]

With the noise factor of school - a good point. Would wearing headphones, or white-noise generator, or possibly entering/leaving at a time when the corridors aren't full of noisy kids, be a possibility? We had to make similar precautions at school for difficult child 3, because he would find the noise a really big deal.

FOP, I've known someone who was helped by the stimulation situation by seeing both a physical therapist who specialized in sensory as well as a biofeedback specialist. The PT gave her some tools to deal directly, the biofeedback to deal with the anxiety.

 

[Star*]

I have no knowledge of Lymes and some personal from Obsessive Compulsive Disorder (OCD), but bunches and bunches of migraine and cluster headache info.

I have tried everything for relief of migraines. Due to finding my triggers I am now limited to two crippling migraines a year. I can't talk, can hardly walk, can not see, blood pressure goes into stroke range and I get a nasty little cocktail of Delauded, Morphine and Phenegrin (all spelled horrible wrong). I sleep - the blood vessles relax.

I have to watch my triggers - some I can control like no MSG, not wearing my hair in a pony tail, not wearing head bands or barrettes, avoiding certain cat dander, and some I can not - like the weather, stressful situations (some), strong perfumes or scents, staring at a computer screen that isn't height matched to a task chair, prolonged mononotous noises and bad lighting.

I have found that taking a plain old aspirin once a day helps but the best help I've gotten was Relpax. It's expensive and not a daily medicine, but if taken at the onset of light auras or pressure? Stops a headache flat 8 out of 10 times. If you take Excederin Migraine daily? Eventually you are giving yourself a bigger problem than you had to start and coming off of caffeine (it's key ingredient) is HEll on earth. Caffeine withdrawls hoover badly.

If she can't handle the school atmosphere - how about getting a teacher to come to your home instead? One on one? We did it with Dude and it worked great until he felt he had "ougtrown" her. In your daughters case of course she has Lymes and Obsessive Compulsive Disorder (OCD) - which I can't imagine the pain - but she could build up to maybe one day a week going in the morning hours. Then the rest at home with her teacher. We lucked out and got a former SPED teacher who had semi-retired. Worth a look around to get her on the SD payroll to help your daughter.

Sending hugs - I live with someone who is chronically ill - no fun at all.
But it makes the good days extra special.

 

[DammitJanet]

When I explained this situation at my disability hearing I told the judge this:

"Your Honor, I am pretty sure I could work some type of sit down job (such as toll road attendant-their suggestion) for 3 hours a day, 3 days a week. The problem is I cant tell you what those hours and days are going to be ahead of time. Some weeks my good days are on the weekends...sometimes they are in the middle of the week. Sometimes my best times of the day fall during the morning, or the middle of the day...or late at night. I cant tell you for sure. I cant predict with any measure of certainty when I will be sick.

He seemed to like that answer.

 

[Josie]

I think I will look into the biofeedback at some point. There is a woman in the local Lyme support group that says it was helpful to her.

The tutor is an excellent idea. I have tried to get difficult child to go to tutors before but she ends up not feeling well enough to go often enough that I have given up on most of it. difficult child wants them to come to our house but I've always thought it would be better for her to have a place to go. I am giving up on up on that idea, though, if she doesn't go back to school. I would love to have a tutor come and take the teaching burden off from me and have a few hours to myself.

 

[Josie]

Janet, I think that might be how my daughter feels, too.

 

[TerryJ2]

I feel for you. And for her.
Awful situation.
You've gotten some great ideas here.
All I can do is send good wishes, strength and healthy vibes.