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Starting Over In A New City
(By Gaye Sandler)

You’ve probably heard the saying “There’s nothing scarier than the unknown.” You also probably agree that this is especially true for IC patients.  Just the thought of starting over in a new city and leaving a supportive network of doctors (who you have grown to trust and depend on), as well as supportive friends and/or family members, is very frightening.  When faced with such a transition, it’s necessary to prioritize your needs in order to keep the physical and stressful challenges of relocating realistic and manageable. 

Putting your needs first may sound selfish, particularly to a partner and/or other family members.  But, if you do not do this the move will be much harder on everyone involved.  As you may know from our last column, we had to evacuate New Orleans and move to Houston.  We obviously weren’t able to plan our move.  Everything happened so quickly with Katrina and things were out of control.  But, the experience made us later reflect on how much control we actually have had when we’ve moved and relocated in the past.  We even realized how we’d make another move even easier. We hope the following suggestions will help if you find yourself moving to a new city.

GET PACKING

Begin your packing well in advance.  This will help you avoid a packing marathon, which can wear you down or even flare your IC or fibro symptoms.  You need to conserve your energy because you will be away from your daily routine for some time.

Try to find helping hands for the physical challenge of packing.  If you can afford packers, hire them.  Or, ask your friends or family members to help.  You will still probably have to supervise, and may want to participate by packing light objects.  Since IC often affects core strength, avoid lifting heavy objects or boxes.  You’ll also help yourself by placing boxes on tables so you won’t be bending over to pack them.  If you are chemically sensitive, try to limit boxes (and packing tape) to one or two rooms, away from the bedroom and living area or get a PODS (storage unit).  Ask packers to please avoid wearing fragrance.  If this doesn’t work, open windows to ventilate rooms, use air filters, and/or wear a mask.  The idea is to stay as well and strong as possible for the move.

Since unpacking is also a physical challenge, plan to have somebody place your boxes on a table before you unpack them.  Unpacking may be slow when you’re dependent on others, but leaning over and lifting from boxes on the floor guarantees back pain and/or pelvic floor pain for most IC patients.  Investigate moving companies or maid services that may be able to help you unpack.  It’s all about pain prevention.

BEGIN THE PROCESS OF FINDING NEW DOCTORS

Plan ahead!  No one (hopefully) would move to a new city without checking out the schools for her or his children, and no IC patient should move to a new city without researching the medical community.  Remember, your IC is like a baby or little child that needs constant consideration and care.  This means starting the process of finding the right doctors before you move.

Begin your research for urologists and IC support groups on the IC Network.  If you can’t find either, call local hospitals and ask the urology departments if they know of doctors who specialize in IC. 

You may have to travel to a near by city to a see a doctor who specializes in IC, or to attend an IC support group if there isn’t one in your new home.  You might find an urologist in another city who will be able to work with a local urologist, or refer you to a general practitioner who understands IC.  Even if you have to pay out-of-pocket for one visit, it is usually worth it.  Networking with other IC patients at a support group will help you to find leads on urologists, general practitioners, and IC patients who live close to you.  But, before you move, try and contact a support group leader in or near your future home.  You will most probably learn a lot, so have your pen and paper ready and your questions written down before you call.

When Andy and I ended up in Houston we felt very lucky to have an IC connection.  Several months before Katrina, we were asked by Cindy Sinclair, president of the ICU of Texas to be a vendor at the IC Patient Education Day in Houston.  We called Cindy after arriving in Houston, and she gave us Dr. Delhey’s name.  Dr. Delhey worked with my IC needs and was able to instill my bladder cocktail just as I requested:  ½ the typical dosage of DMSO, double the typical amount of heparin, and the full amount of hydrocortisone, with no lidocaine.  As you can imagine, I really needed a treatment and Dr. Delhey couldn’t have been kinder, or more helpful.  She also referred us to a great general practitioner, who she said would work around my IC.  Dr. Vickroy did indeed work around my IC. 

Andy and I were impressed with the medical community in Houston, but we would not have found these doctors without Cindy Sinclair.  We cannot stress enough the importance of networking with other IC patients.    

ORGANIZE YOUR MEDICATIONS

Don’t forget to double check your meds and have prescriptions refilled before you leave.  Although you can contact your old doctors to call in new prescriptions, it’s much easier to refill your medications and/or get written prescriptions to bring with you.  We’re sure you’ve encountered a situation in which it was difficult to get a prescription from a new doctor.

Never assume that you won’t need one of your medications during the move, or when you first arrive in your new home.  Always bring “all” of your medications with you.  Avoid sending them with the movers.  You need to feel as secure as possible.  

TRAVEL SMART TO YOUR NEW DESTINATION

If you are moving very far away you may need to fly rather than spending hours in a car.  However, flying alone can be very challenging for the IC patient.  There are lines to stand in, heavy bags to lift and/or carry, and just the plain stress of flying.  Consider your special needs: 

  • Fly on an airline where you can reserve a seat, if you can afford to.  
  • Ask a friend to come to the airport with you if you are traveling alone.  A friend can stand in line for you while you run to the bathroom.  And, she or he can help you with your baggage. 
  • If there’s going to be no one waiting for you at your destination, find out in advance if there’s porter service. 
  • Be sure to pack light if you have to lift your baggage when you reach your destination.  Send your heavy clothes with the movers. 
  • If you are traveling by car, and you are chemically sensitive, shut off the outside air vent. 
  • If you use an ice pack, bring it along in a small cooler bag.
  • Make sure to always have a travel potty or pads in your car.
  • Try to avoid the lesser expensive hotel or motel rooms, where there is often heavy use of ammonia and bleach cleaning products.
  • Because most hotels use fragrance in their cleaning and bathroom products, make reservations so you can request no carpet fresheners or room deodorizers when they prepare your room.  It’s the same as requesting a “non smoking” room, and most hotels are becoming familiar with chemically sensitive guests.

These details are worth planning out.  Even when things don’t go exactly as planned, you will begin your move with less mental stress. 

BUILD A NEW SUPPORT SYSTEM

Not only is it important to network with other IC patients, it’s also very important to make new non-IC friends.  Many years ago, in 1988, six months after my IC diagnosis, Andy and I moved from New Orleans to Boston.  We were upfront and honest about my limitations with every new person we met.  And, as a result we attracted true friends.  In many ways, new friends were more understanding of my IC than some of our old friends.  Of course, we can only imagine how very difficult it must have been for family members and friends, who were part of our healthy past, to reduce and modify their expectations of us.  (Remember, IC affects couples.)  But, we found that when we informed new people of my IC, we would know by their response where we stood.  We also discovered that people who were genuinely interested in us would work with our needs.  The bottom line is to surround ourselves with people that make us feel good about ourselves. 

Andy and I realize that two people have more influence on others than one, but two people can mean you and a friend, a relative, or even a doctor.  When you find an advocate you’ll know who counts in your life, no matter where you live. 

About The Authors:
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew has over ten years of clinical and health care management position. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

They welcome your comments and feedback on their articles at: The Sandlers


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