Journal entry from 2 years ago
What is my Heart learning from all of this?
What good am I doing on the Planet?
Now, I hear the Canadian Geese overhead and the other birds are coming to the feeder again and this brings me Great Joy! I love to watch the seasons Change- especially the sun returning to us in Spring. I need clay here at home so I can create in the morning when I am my best. I have a lot of ideas. I am now attempting to buy a house and it feels so exciting because it feels like part of my life is coming back. I think somewhere in my heart that I expect to wake up and this bad dream will be over. I will again feel the warm slipperiness of new life screaming hello into my hands again. I want to move on so I can stop mourning my old life and begin anew.
Me
I wanted to start off with a glimpse into what life is like here in the land of "long term illness". I know that you already know, but I wanted you to see that I know too. Here's my story in abbreviated form.
I was a nurse-midwife, and single mother of a 8 year old daughter when I was diagnosed in 2003, with a tiny pituitary tumor (in the middle of my brain). This tumor made me very sick, crazy high blood pressure, congestive heart failure, diabetes, osteoporoses, fatigue that was extreme and some memory loss, etc... I had a surgery to remove it in 2003 and was out of work for 3 months, but I seemed to improve for awhile. In 2006 it returned, I had a second surgery that didn't work and got progressively worse, radiation helped after about a year. I am now permanently disabled, due to fatigue, requiring several naps a day, less brain function than I would like to admit. I am not who I was. But I'm still here so there must be some purpose for me staying on the planet. My daughter is now a beautiful young woman of 16 and thriving and I'm so grateful to have been a part of that process. I loved being a nurse-midwife, it was my calling and now I'm ready to admit that is over and I have to find something else useful to contribute to the world, even in my "disabled" state. I hope to offer you some of my "wisdom" and coping skills for dealing with a prolonged illness. I think the medical stuff was easier for me because of my medical background and the organization comes from that as well. May you be Well. May you be Happy. May you know Peace. (there is a little song that goes with this that I often sing for myself and/or others---I like prayers that I can sing or "solid prayers" like making something in clay or fabric...I will sing a little prayer in there for the recipient. Ok. More on that stuff later, Now for the Charts, Recipes, etc.
MONEY
All right, my friends let's just get it over with and talk about $.
The ugly truth is we are all going to get sick and die. The problem comes when you just get sick, and you need $ to support yourself without any means of doing just that.
All the financial gurus say it...
THREE TO SIX MONTHS OF EXPENSES EASILY ASSESIBLE
It's true, this is best advice. This is because first you have to use up your vacation and sick pay and then a week or two with no pay (I can't remember) and then short-term disability kicks in. (It was no problem getting approved, they basically needed a surgery date and they were good...they could see that someone with a newly cracked open head should not delivery babies for awhile). I had the idea that long term disability would be the same. WRONG. Maybe, they thought delivering babies was no big deal and I could do it from my bed or maybe I had made up this whole brain tumor thing...just to get 60% of my previous pay and I was at home laughing to the bank. I couldn't walk to the mailbox or knit without being short of breath and my heart rate being 130, but maybe I should deliver your baby. It is not Logical, but then again it is about $. It took over a year to get any payment from long term disability and 3 years to get Social Security Disability.
More Expenses + Less Pay = Way Broke
401K is not necessarily accessible. they wouldn't let me take any money our without a foreclosure /eviction notice. I don't know that seemed kind of late to me. I had prepared since 2003 illness. I paid off all my medical debt with a equity loan, paid off all my credit cards and banked all the money I could. I had a 50% chance of getting sick again the Docs said, so...I prepared. Most folks aren't "lucky" enough to get a kick like that to make you save.
3 things to do today about $
1) Accessible $ for normal expenses
3-6 months of expenses (or wealthy parents...who like you)
2)Additional IRA safety net
as a rule you can get to this...you will have to pay income taxes on this and if you are not officially disabled by the government (I.e. Social Security--remember it took 3 years!) then there is a hefty penalty as well.
Pearls of wisdom
You are going to be stressed out about your health, Money worries will only make matters worse.
Money doesn't make people happy, but not enough sure makes it more difficult to be happy.
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Losses
There are a lot of these and you can make your own list. I actually think it helps to name them so you can grieve and move on...you are not getting any younger here.
here are some broad categories for me, to give you some ideas:
Career
Home
Freedom
Dreams for Future
Relationships change (related to homebound and stress of illness,$,etc)
I recommend therapy with someone experienced in chronic illness (ok so any licensed therapist or psychologist will be experienced because this is one of the big things that makes us show up on their couch.)
Support groups (they even have them for disease specific) This was helpful to me because I had something weird and felt so alone.
http://cushie.info/index.php?option=com_comprofiler
Cushing's Support Site has a lot to offer.
http://cushie.info/index.php?option=com_comprofiler
Cushing's Support Site has a lot to offer.
My Emory Doctors had a "pituitary conference" for the residents and also their patients and families. When I saw folks who looked like me, (there are certain physical characteristics that are specific to Cushing's) I started to cry because I knew their suffering and somehow had more empathy for myself...seeing that suffering in someone else. I wasn't making it up it was real , very real. I got to stand up and tell my story. well I had to sit down because I couldn't stand up for 10 whole minutes.
You are not as alone as you feel. Talk to your family. This is happening to them Too. Don't try to protect them. Let them in. This can really make you closer.
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Dealing with Medical Folks
I was a Nurse-Midwife before all this happened so this means I have the inside scoop on how the medical system works---and how it doesn't.
Golden rule** Treat people as human beings and they will do the same.
Medical folks are working harder than ever, trying to make a dollar or not lose two...so this means faster, less personal care that is not satisfying to you or your caregiver.
Be a real person. Make them Laugh. Engage them as human beings. Life is about connection..let's live every moment well.
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| MRI fun |
Short story...I used to have claustrophobia and would absolutely freak out with MRIs, even with sedation. One MRI, a nurse on one side was putting in my IV and another tech was putting on my helmet and stuffing it with towels so I couldn't move...and no one was talking to me or looking at me in the eyes...just barking orders at me....NUT UP is what I did. I started climbing out of the machine and then like 7 folks came running in through the big metal door...like at the bank or prison or something. Ok...just FYI...if someone is freaking out about claustrophobia...I think 7 more folks in a tiny room ain't going to help...just saying...I was crying and rocking, the whole bit and wondering which one had the thorazin gun//you know like you see on wild World of animals...to take down the charging elephant. Then this beautiful giant man, I think he was the janitor...he just held out his hand to me and looked me in the eyes...treated me like a person and I calmed down and said, If yall will just talk to me not at me, this will go a lot quicker and nicer. it's all good since then.
1) You know more than anyone.
No matter how many letters are after someone's name , or how many times they have been published....you know how you feel- speak your truth.
Once I had a "Cushing's specialist" Doctor tell me that I couldn't tell him the scientific name for my symptom. I could only describe it to him and He would decide if my "Perceived symptom" deserved a name. He may have seen more Cushing's people in his career but I HAD Cushing's and I had done my research and That whole scene was just stupid.
Get copies of everything---
labs, diagnostic reports, Ultrasounds, MRI's, insurance cards front and back, orders for everything.
Get 2 copies of everything, then you can just hand them one and everyone is so happy with you for making their life easier. It is better than bringing donuts!
Just carry everything around with you in your "going to the doctor bag"
If the doctor you are seeing today doesn't have access to what the Doctor last week across town found out...it is as if it didn't happen. Faxes don't really happen. This is frustrating for everyone. I don't leave without a hard copy of my labs, or tests to be done...because they won't have the fax when I come back in 2 months, and then my doctor won't be in and ...this is a nightmare without coffee!!!!!
You get the best care when everyone has the same information. It is your job to keep this happening.
Calendar
1) What day labs were drawn, where, what day the tests were performed, which doctor ordered them.
All this information greatly speeds the process when they are searching the computer for stuff they don't have because guess what..faxes don't really happen
So.. I know, it's not fair, you are sick and they are supposed to take care of you.
Whatever!.. you're sick...it ain't fair.
Ok! Now do everything you can to get the best care.
2) Write down appts. then in the weekly part write the details of the appt.
BP, wt, labs results, reviewed plan of care
questions I have( I write these ahead of time so I don't forget)
I make them wait while I write down the answer (this way I don't have to call you later...I say so sweetly and they are understanding)
If I don't understand, I ask again.
I get a copy of stuff before I leave.
I keep 3 years worth of this stuff in my notebook.
When I leave the office. I sit down in the waiting room and immediately summarize the visit and clarify with whoever went with me that day.
Meds in Calendar
Whenever I have a medication change I write it down in the calendar. new med, dose, what it is for, which doctor prescribed it. This way I can look at a glance and tell when changes occurred. Helps when you see the next doc.
The trick is to get them to all play nicely together---facilitate their communication by keeping good records.
The next day, I update my medication handout in the computer and make new copies for everyone and put them in my calendar for handouts next time. I destroy the old ones so I don't get them confused.
Handouts for you to keep with you, in your calandar that you are carrying around to all your doctor visits to keep track of everything.
(have several copies so you can keep one as you review with medical professional you are sharing the handouts with at the time)***facilitate communication among your providers...this makes your health care the very best it can be! I make notes on my copy of the day if we change anything...like medication or I need to see a new doctor or something. write it down right now!
1) List of Current Physicians
specialty
address
phone number
fax number (even though we know this doesn't work)
I also write down when I first started seeing them
2) Current Medications
Name /date of birth/ Allergies
medication, dose, how you take it, which doctor gave it to you, purpose of medication, when did you start the medication
I always review my medication list the day before a Doctor visit and write our any problems side effects, questions or if I need a refill
I write the date of last update in the bottom corner so I know.
I keep several copies so everyone can have a copy
Pharmacy information is helpful as well. name address phone #
