Newbie Toolkit

[Guest brianala]

I just want to start by thanking everyone for being patient with me and sharing all the wonderful knowledge you've gained through your experiences.

Since I'm still new to this there's a lot to take in. I've come up with a list of things I need to check into, but before I go out and start buying stuff I thought I could get your recommendations for items that a newbie might need to start off.

So here's my list of things to pick up, but let me know what else might be good to add, or if you have recommendations for a specific brand/type, or comments are definitely appreciated:

- Heart Rate monitor: I've looked at several kind and while the Polar seem the most accurate, they are expensive! Any good alternatives?

- Blood pressure cuff: I've already got one of these at home so I can check my bp when I need to.

- Compression hose: I looked at some in the store yesterday but they didn't have my size. Any good places online to order from? What should I look for?

- Supplements/vitamins: I'm going to pick up some Turmeric caplets since I'm not too happy about adding it raw.

- Food/drink: Someone here suggested keeping chicken broth or similar on hand to help get my salt intake. I've already done this and it's great! Instead of coffee or tea I now just warm up a cup of chicken broth (or french onion soup) in the microwave.

Anything else I might need to get started managing my health better?

Thanks for everything!

[EarthMother]

So here's my list of things to pick up, but let me know what else might be good to add, or if you have recommendations for a specific brand/type, or comments are definitely appreciated:

- Heart Rate monitor: I've looked at several kind and while the Polar seem the most accurate, they are expensive! Any good alternatives?

I don't like the chest strap ... so I have opted for the Prevention HR-180PV/MF-180PV Chest Belt-Free Heart Rate Monitor from Amazon. The price varies greatly but sometimes you can get this around $40.

- Compression hose: I looked at some in the store yesterday but they didn't have my size. Any good places online to order from? What should I look for?

I probably buy from http://www.brightlifedirect.com and http://www.ameswalker.com depending on who has a deal. I buy the thigh highs and have to always make sure I get them with the grips at top so I don't have to wear a stocking belt. I have tried several of the "cheaper" brands, but unfortunately they all seem scratchy to me except the JOBTS which tend to be pricey.

Good luck finding things that help.

[lizzyp]

I have the Mio heart rate watch. You can buy it on the Mio website or if you have an Academy near you, you can buy one there. My watch is very accurate and I have had it almost a year now.

[firewatcher]

A BIG D-ring binder with dividers for ALL your medical records and test results. Get copies, organize them however you see fit and keep them so that you have them with you in one place when you go see any of your docs.

In the front keep copies of a one page symptom summary and medical history, a current list of ALL your medications and supplements (dosages and times and why you take them,) a list of all your current doctors with their names, practice name and phone and fax number. ***by having copies of this, you can give it to the nurse/doctor when/if they ask and you don't have to wait for them to make a copy and you possibly lose it***

[flop]

I use a polar HR monitor. There are lots of polar products but most of them are much more fancy than we need. The basic FS1 model is what I use and I got it on offer in the supermarket. On a UK website I found it for ?30 (approx $40) and there are probably similar deals in the US or on sites like eBay.

BP monitor wise I use an Omron (they are apparently the most accurate and are used by lots of doctors in the UK). The arm cuffs are more accurate than the wrist versions.

Along with the file for your medical results, have a section where you write down any new symptoms (what happened and when) so that you can look at it before an appointment. Plus paper to write down questions you want to ask the doctor - you can bet as soon as the consultation starts you will forget everything you planned to ask!

My addition to the list would be a good re-useable water bottle / container and a water filter jug for the fridge (I hate the taste of tap water and filtering is much cheaper than buying bottled water).

Flop

[goldicedance]

food: ramen noodles; canned soupes; pickles; pretzels; chips; salted popcorn; V8 (not low sodium)a hot dog every now and then

start the day - before you get out of bed - take your beds and drink giant glass of v8.

Do not spend the day laying down - that will get you even more conditioned. Use a reclining chair!

Find a hobby to help you stop from counting all your heartbeats

Avoid taking blood pressure every few hours unless your doctor orders it. You will become so focused on it that it might make you think you feel worse when you see strange blood pressure readings.

Some thoughts

Lois

[MightyMouse]

I keep an single serving elecrtrolyte packet that in my car to mix into my water bottle if I've gotten at all dehydrated or if my heart rate wont come down after just drinking fluids and eating normally. I try to keep one in my desk at work too.

Nina

[Guest brianala]

A BIG D-ring binder with dividers for ALL your medical records and test results. Get copies, organize them however you see fit and keep them so that you have them with you in one place when you go see any of your docs.

In the front keep copies of a one page symptom summary and medical history, a current list of ALL your medications and supplements (dosages and times and why you take them,) a list of all your current doctors with their names, practice name and phone and fax number. ***by having copies of this, you can give it to the nurse/doctor when/if they ask and you don't have to wait for them to make a copy and you possibly lose it***

Ooh, this is a great idea, I hadn't thought of! Thanks!

[Rachel]

Medical Records

I have a file cabinet in which I keep all current insurance paperwork, disability paperwork, medical bills, etc.

I keep all old medical records, medical journals, insurance paperwork, and disability paperwork in a file box in the closet. I rarely ever need to access this information, so I keep it out of the way.

I keep all recent medical records in a large zippered tote bag. I have a manilla file folder for each doctor/doctors office/hospital, and I place new records in the appropriate folder in chronological order. When I need to go to a new doctor, this bag comes along in case they need to make copies of particular records.

I keep a small tote bag with my current medical journal, doctors appointment calendar, and a select few medical records. This tote bag goes with me to every appointment.

I have too much stuff to keep all in one place (unless I had one very large file cabinet!). This system has worked very well for me, and it makes it easy to bring along only what I need to each appointment.

List of Medications

In addition to keeping all of my medical records, I have found it very helpful to have a list of current medications and dosages. I update the file on the computer whenever necessary. Then when I go to a new doctor, the list is ready to print and take with me. I also keep a list of all medicines I have tried in the past. After 14+ years with dysautonomia, it gets really hard to remember which medicine you tried when, what happened, etc. I have a document on the computer of all medicines I have tried in the past. I include the following information: Medicine, dosage, dates I used it, side effects, and results. This information has been very valuable as I go to new doctors and discuss possible treatment options, past treatments, combinations I've had of medications, etc.

Compression Hose

As for compression hose, I order mine online from Ames Walker. They have good prices, and shipping is very cheap, often free.

Heart Rate Monitor

I've never had a need for a heart rate monitor, and my doctors have never recommended that I get one. I rarely have a problem with my heart rate going too high or too low for an extended period of time. If I need to check my hr I just do it the old fashioned way with my finger and a watch with a second hand. I know that hr monitors are helpful for some, but if you can get by without one it will save you a lot of money!

Medical Alert Bracelet

Another thing you might find helpful, especially if your symptoms are severe or if you faint a lot, is a medical alert bracelet. I have one of these that I wear any time I leave the house. If I'm ever in a situation where I can't speak for myself, the bracelet will explain my condition to medical professionals.

Water Bottle

I keep a water bottle with me at all times, especially when leaving the house. You never want to be caught without access to water! I also have electrolyte packets in my purse just in case I need them while out.

I hope this information is helpful. There's a lot to learn, but soon it will become second nature to you.

Rachel

[taylortotmom]

Personally, I keep the following in my purse for emergencies away from home: migraine medicines- I can't imagine leaving without an Imitrex nasal spray- if I don't have my migraine meds- I don't go- it's that important for me; peanut butter crackers- the salt and protein both help when I need a quick boost when I start to feel queezy; peppermint candy- again for the nausea; cell phone; emergency contact info in case something happens; insurance and med information cards (I have a pacemaker); sunglasses- this is another one of my- if I don't have it I don't go items; and absolutely, most importantly, I never walk out the door with a bottle of Gatorade in my purse AND one in my hand. Obsessive??? Nope- realistic. I have lived with this for eight years and I have learned what it takes to minimize the effects of this disorder when out and about- at least for me. Hope this helps

Carmen

[zoe ashcraft]

Hi, new here- I was wondering if you would include a shower chair in your list. ? I know mine has certainly been a lifesaver, literally for me. As I tend to faint, or at least become unable to function in the water easily.

Is this a norm with POTS?

I am also thinking I must start carrying earplugs with me as the sounds sometimes get triggering- along with sunglasses for bright lights and my ativan for calming down any spasms that start to crop up. I do all of these already except the ear plugs and I keep kicking myself for forgetting !

thanks.

zoe

[firewatcher]

I thought I'd move this back up since we have quite a few newbies asking for tips. It is a not so oldie, but still a goodie!

[Noreen]

I thought I'd move this back up since we have quite a few newbies asking for tips. It is a not so oldie, but still a goodie!

Thanks firewatcher-

It truly is a goodie. I would add the Syncope Countermeasures page from this 2009 newsletter from Dinet.