Please fill out this survey for me!!!!
I am looking to collect data on SB in the U.S. There is not much data on adults with SB and I am hoping this will help show the medical community that we exist and we deserve attention and medical care throughout our lifetime!!!!
So I haven’t blogged in a while and I apologize profusely!!!! Time management is something we all could use more practice with especially when you are working a full time job, managing your household and your health plus numerous other projects!!! So here is the lowdown on what has happened these last few weeks!!
I “graduated” from my training class at work and now I am adjusting to my regular schedule which is over night. My body is wants to adjust but things that need to happen must be accomplished during the day when stores and doctor’s offices are opened. It is sad that there are a lot of people that work over night however the rest of the world refuses to acknowledge that schedule. Sometimes I wonder if we work too hard and too much just to keep up!
My pain has increased however I do believe this is a direct correlation to getting back into the working field and dealing with the adjustments. I refuse, however to give up especially when my family needs this extra income! I am sure at some point my body will adjust, like it has before, and the pain will level out to a much more tolerable level. I also feel guilty that my home is not kept how it should be however again this an adjustment that we will overcome!
No matter what ability or disability that you may have or not have, does not mean that you are incapable of following your dreams and doing what is necessary to provide for your family, whether it be financially, spiritually, emotionally, physically, and psychologically. Those things will always be necessary for the family unit to thrive and you are always an essential part of that unit.
Putting yourself on a detailed schedule can help you in many ways with time management however you have to be dedicated. It is a learning curve I know and one that I have always struggled with, however communication with yourself and your family is always the best way to develop your time management skills. I will be researching better ways to manage the time I spend and making it productive without giving up on the things that mean the most to my family and myself!
I love blogging and it is a release for me to vent my frustrations and achievements. Plus it is a way for others who may be in the same situation or one like mine to know there are other people out there fighting the same battles and achieving success no matter what odds may be stacked against them!
I hope that all my readers will understand that I am dedicated to this blog and to informing the world about Spina Bifida, RSD/CRPS, pain management, and other issues as the blog continues to grow. However the learning curve may take me away from this from time to time but I refuse to give up on what I am passionate about, this blog being one.
Know that like everyone else, I am and will continue to be, a work in progress. I will continue to grow as an individual, a wife, a mother, a sister, a daughter, a friend, and a blogger amongst other things that define me! I hope that you all understand and know that I feel I have been called to this mission of informing the world that no matter what your odds may be that you are always needed and are important to others!!! I will not stop till I know that I have made a difference in this world no matter how big or small it may be!!!
That being said……shuffle on my friends!!!!!
SIMPLE MEDICAL WORKSHEET OUTLINE
(with examples)
****All that is bolded and underlined below, should be on your worksheet (bolded & underlined), so they are able to view and distinguish between the different fields. I would also single space it so you can fit more onto one page****
MEDICAL HISTORY
Name of Patient
Date of Birth
Insurance information
Parent’s Name
Parent’s Contact Information
ALLERGIES (this needs to be in red bolded font and highlighted)
DIAGNOSIS (list these individually, on separate lines)
Spina Bifida
Hydrocephalus
Neurogenic Bladder (must catheterize)
MEDICATIONS (list the name, dosage amount, and dosage schedule – you also can google how to abbreviate dosage schedule EX: prn, bid, tid)
Ditropan 10mg/pm (meaning you take 10mg at night)
SURGERIES (list year, exact surgical procedure, hospital name, hospital location)
2011 Release of Tethered Cord Vanderbilt Hospital, Nashville, TN
DOCTORS (the one’s you see on a regular schedule, what specialty, list their name, address, and telephone, you can do this in two columns and use abbreviation for their specialty)
Dr. Joe Smith – General Practitioner/Primary Care Physician (GP/PCP)
1234 Medical Park
City, State, Zip
(555) 555-5555
Dr. John Doe – Neurologist
4567 Medical Plaza Dr
City, State, Zip
(555) 555-5555
*********** You should make this as a Word document and save it, so you can update information. It is a good idea to make multiple copies. Keep one in your purse, in your car, in your child’s backpack, file one with the school, at home where you store emergency numbers and information, leave a copy out for the babysitter in case of an emergency, file a copy in the medical binder, take them to all doctor’s appointments (either give them the sheet or have them make a copy), and bring them to the ER or Urgent Care facilities if your child needs to see a doctor quickly. This helps you know all the information many doctor’s offices and ER’s need to know to help determine the best care for your child. Keeping it up to date will also help you keep track of everything.*************************
Hope this helps you my friends! Keep shuffling on!!!
I have been in the Direct Sales business for a while now. I have worked with four different companies and are still running three of them. However, due to a lot of outside problems, I have not been able to work them like I know I should be so that I can have a steady income. Unfortunately, extenuating circumstances has popped up where I have to go get a job, so I can help my family with a more stable income. I really don’t mind, because honestly, I am bored a lot of times being by myself. So starting on Monday the 9th of February, I will be back in the work force full time. I still will be working my Direct Sales businesses, so I will be learning a lot about time management!
Working with any disability is about finding the right job that fits what you need and what you love. I have been in the banking/accounting field for a long time. Practically since I graduated from high school. Unfortunately, I don’t have the ability to stand like I used to for long periods of time, so being a teller at a bank was out of the question. However, I love the banking industry. I love helping people with their finances and I love making sure that they are in the right checking or savings account, or even in the right interest bearings accounts like CDs. (Throwing in a little financial jargon!) So, I have found an amazing job at a bank call center! I start training Monday for five weeks and then I will start my regular shift. My shift is a few people working together as a team to help customers over the phone with their banking needs.
I found the right job for me! I can sit and answer calls to deliver great customer service, which is something I highly love. I am also able to stand and walk around for a few minutes, if and when I need too. Having a disability doesn’t always mean you can’t work. You can find a job that is tailored to your needs and the company is tailored to your wants while accommodating your needs and will place you where you will fit best in the company. I am blessed for finding all of that within a 3 week time period!!!
Don’t ever concentrate on what you can’t do, because can’t needs to be eradicated from your vocabulary. You might have to do things your way, which is different from others, but you also have talents or abilities that they aren’t able to do that you can do exceptionally! Each of us have so many gifts and talents that we can offer to everyone. That is what we need to focus on and learn to develop so that we can find a place to excel.
So can I make it through my first week of work??? Yes, I can despite what I may face physically! I have the necessary gifts, talents, and knowledge to offer my company and my team, to excel and rise above our expectations and goals. Having a positive attitude is the key to being successful in whatever you choose to do with and in your life!! Remember this quote:
Take those shots, whether you are on or off the ice!!!! You never know which shot will be the winning goal!!
Shuffle on my friends!!!!!
Recently I have been on the road, traveling from Florida to Texas and back. Traveling takes a lot out of you. You get out of the daily routine that you are used to, which can be frustrating. You may stay with family or friend’s and try to figure out where you belong in the dance they have rehearsed and perfected of their house. You drive many hours or fly and have to deal with the airlines, security and luggage. It is all exhausting, especially when you have medical problems. The stress on wondering if you packed everything for the what if’s, could send you to a padded room alone!!!! However, the best thing to do is plan everything out!!!
Funny that I say that when I am not the most organized person. I like controlled chaos. I don’t know why but my brain does not function when everything is in it’s place or organized perfectly. Yet when traveling, I have to overcome the chaos and organize everything. So here are some steps I use when traveling.
1. Know where you are going and staying.
2. Figure out the best way for you to travel there, whether it is flying or driving.
3. Make a list of what you absolutely need to take, from medical supplies to your clothes. Look at the weather for the time you are staying so you know what you will need clothing wise.
4. If you are flying, you want to make your list manageable and not overwhelming. Take only what you will need. This way you do not over pack and do not have to worry about all the luggage.
5. If you are driving sometimes travel plans change so be prepared to have an extra bag in the car with an outfit, pajamas, and extra medical supplies. Also, remember to stop frequently to stretch, use facilities, eat and hydrate. In case a problem may arise, figure out where you can stay (ex: hotel) if you need to stop overnight somewhere. This can save you a lot of frustration.
6. Pack efficiently. When you know where you will be staying, see if there is laundry facilities. This way it cuts down on clothing and the amount of suitcases you have, that way you can wash your clothes and not have to take so much. I tend to over pack and find out that I don’t wear half the clothes that I pack.
7. When flying, carry all your medications and supplies plus a change of clothes on your carry on. This way if your luggage is lost or arriving later, you will not be in need of the most important items. Also, call ahead to the TSA and airline, notifying them that you are handicapped and whatever special needs you might have and if you need help through security and to the appropriate gate. Calling ahead and arriving early will help this process run smoother and help ease the anxiety.
8. Print out a brief medical history and bring it with you wherever you go!!! (This should have been number 1!) This should have your full name, insurance information, diagnosis, medication list, allergy list, a brief surgical history, and contact information for your doctors and for your point of contact in case of an emergency. This is also a great item to keep in your purse, wallet, day planner, vehicle and home.
9. Remember traveling can cause you to have anxiety especially when you have a disability. Stay calm and plan it all out. Notifying your doctors of your travel plans and of any anxiety is always the best thing to do and they can also help ease your mind.
Wherever you might be heading, remember to have some fun!!!! Hopefully your next trip will be easier with these tips!!! Enjoy and safe travels!!!!
Christina Shuffle 