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Posted on 2. 三月 2017

How Not to Feel Like a Victim When Managing Chronic Illness

By Christine Wolf

No matter where you are in your journey with chronic illness, you are not alone. At any point, it’s all too easy - and common - to feel like a victim. But, the journey can be made easier by understanding chronic illness’ three phases, and then finding ways to acknowledge your diagnosis and take care of yourself.

Three Phases of Chronic Illness

1. Initial stage

In the initial stage, you might experience the following frustrations:

  • Unanswered questions - What are the possible diagnoses? Who could best treat them? What process should you follow? What’s the best protocol? Why is this happening? Could you have prevented this?
  • Feelings of abandonment - We’ve grown up thinking our doctors have all the answers. When they don’t, we tend to feel untethered from those we trusted to guide us.
  • Obsessed with finding answers - Armed with an Internet connection, these questions and feelings have a way of making their way into search engines and online forums, compounding feelings with a multitude of conflicting perspectives and approaches.

2. Mid-journey stage

This stage is filled with mixed emotions. At some point, a doctor is seen. Is it the right one? The symptoms and history are described, and an approach is recommended. Maybe you hit the jackpot and find the right doctor who makes the right diagnosis and prescribes the protocol you need to start feeling better immediately. If this is the case, please pen an article titled “I Am the Rare Exception to Living with Chronic Illness.” Unfortunately, that doesn’t happen for the majority. Instead, we face:

  • An inability to access treatment (doctors overbooked; financial constraints).
  • Conflicting diagnoses or protocols.
  • Insurance denials.
  • Moments of panic.
  • Highs and lows - feeling like you’re getting closer to the “end,” only to experience a setback, suffer from a new symptom or gain perspective that the end is not as near as you believed.
  • Challenges with others who question or doubt your struggles, particularly if symptoms aren’t visible or answers are not clear.
  • Consuming, intense feelings that your health issues define you.
  • Certainty that you’re missing something.
  • Feeling that you’re approaching things incorrectly.
  • Worry that you’re not up to date on the latest research.
  • Concern that you are a “problem”.

3. Resolution

This stage of the journey is the most important because it is, after all, pure fiction. A resolution will not be reached, because chronic illness is not cured but, rather, managed. And only when you drop anchor in this sea of radical acceptance will the churning waters eventually calm. So how do you “set anchor” sooner than later?


Acknowledge the Obvious

Your challenges are incredibly difficult. This isn’t easy. Honor yourself by acknowledging your struggles and feelings, including your:

  • Pain
  • Confusion
  • Frustration
  • Sense of loss
  • Exhaustion
  • Depression
  • Anxiety
  • Anger
  • Resentment
  • Desire to want to give up.
  • Jealousy toward others who don’t deal with this.
  • Wish that someone would manage this for you.

Practice Self-Care

It might be the last thing you believe, but there truly is life beyond these challenges. You may even have to force yourself to accept that fact. But the sooner you do, the better you’ll navigate the journey. So do whatever it is that gave you joy before the challenges, even if modification is required. Or try something brave and new.
You’ve got this, even if it’s something as simple as:

  • Reaching out to friends.
  • Taking a walk.
  • Meditating
  • Practicing deep breathing.
  • Binge-watching a series on Netflix.
  • Journaling
  • Cooking
  • Volunteering
  • Seeing a therapist.
  • Joining a support group.

Gift Yourself the Time to Grieve

This isn’t what you signed up for, so there will be an unspoken “loss” about how you thought things would go. It’s completely natural to question why you “didn’t see the signs sooner.” But beating yourself up and pushing yourself to keep a brave face at all times are just roadblocks along the way. Allow yourself time for sadness and contemplation. Try not to stuff your feelings. Instead, take back your power, and overcome feelings of helplessness by allowing yourself to experience and express the complicated emotions chronic illness brings. You might have tears, anger and deep sadness. And if you’re like most of us, you may even look for ways around the struggle. But once you’ve fully grieved what was, you can move forward with acceptance about the enormous strength this journey requires - and discover you’re more than capable of staying the course.

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评论 (4) -

Sally C Jones
11:59 on 2017年3月3日

Living near Boston has given me more knowledgeable physicians than many people have. I have lived with CVIDS including RA & OA, bronchectisis, and unbelievable exhaustion for more than 16yrs.  It took years to get my husband to understand that he couldn't just "fix me."
My advice is to keep an upbeat attitude each day. My husband helps me a lot doing the cooking, laundry, and grocery shopping. I help in whatever way I can, even if my help is just sitting with him and reading the recipes to him. Give him praise rather than instruct him on a better way to proceed unless he asks for advice.
In my early and middle stages, I wanted to tell everyone about all the fascinating things I had learned about my illness. People really don't want to know!!  So, find a good hematologist, pulmonologist, orthopedist, physiatrist and rheumatologist and keep your complaints to the correct specialist.
To everyone else, when asked how you are doing either say with a smile, "Up and Down" or " Ok, just don't look under the hood!"

Kim
13:51 on 2017年3月7日

The other day a fellow CIDP stated, what choice do we have.  We have many.  We do not have to take IG.  We could choose to do nothing.  Some do not get this choice.  We can or cannot chose to change our diets.  We chose to go to therapies.  We have choices or we become victims to our diseases.  I chose the best decision for me.  I am not a victim, I did not chose chronic illness, it happened.  I work to make the best of it I can.  We chose everyday, how to continue on.  We can be a victor or a victim, that too is a choice.  

Daniel
9:16 on 2017年3月27日

Hi Guys, I'm helping a friend who's suffering from fibromyalgia. Does anyone ever tried using cannabis as an alternative meds? I have read many articles suggesting highly concentrated cannabis oil can be effective for people suffering from fibromyalgia. So far northern lights strain is on top of my list. I got it's details from www.ilovegrowingmarijuana.com/northern-lights/. Any help or personal testimonials is much appreciated. Thanks

Elizabeth Howard
10:32 on 2017年3月31日

I saw on page 7 of the latest issue of IG Living Magazine that someone was interested in information on Stiff Person Syndrome.  Do you have an event page that you can put an ad for a symposium on Stiff Person Syndrome in May.
www.eventbrite.com/.../2nd-annual-stiff-person-syndrome-sps-symposium-tickets-32941472832

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IG Living Blog | PI Shouldn’t Be Compared with Other Diseases
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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 5. April 2018

PI Shouldn’t Be Compared with Other Diseases

By Pamela S. McKinley

I want to address something serious today. As I am laying here getting my second infusion, I am thinking about conversations I have had with other patients this week. A common trend in the conversations is that patients have caregivers, family members or friends who say: "Well, at least you don't have cancer." I am here to tell these people several things.

First, shame on you. As patients, we need the support of people we love and who love us. It is not a competition of which disease is worse. This is not something that helps us feel better about our disease. Instead, it makes us feel like our stress, fears and journeys are not valid or difficult.

I have battled cancer. About 18 years ago, I was diagnosed with renal cell carcinoma (kidney cancer). I have watched many family members battle cancer. I am not trying to invalidate anyone with cancer, as it is an awful disease. The differences between cancer and a primary immunodeficiency disease such as common variable immunodeficiency (CVID) are many. With CVID, we are told we will be infusing immune globulin for the rest of our lives. With cancer, we know that removing the tumor and starting chemotherapy/radiation will increase the chances of beating it. With CVID, we have no way to know when or where we might catch the cold/virus that might be the end.

Now, I want to share something with you. I was notified last night that an 11-year-old boy just lost his fight against CVID. He caught the flu and his mother took him to the emergency room, where they gave him IV bags of fluids, Tamiflu and told him to rest. He was discharged because the hospital had no room, and he died at home during the night.

This is just one of the many losses during this flu season. For many of us, we hear about these deaths, and we are struck with absolute fear for our own lives. This is when we need our caregivers, families and friends to support us.

Please, don't compare our struggle with another's. Just as all humans are unique, so are our experiences with different diseases. Just hold your loved one, and tell them they are strong and can fight. Encourage your friends and family to donate to the Immune Deficiency Foundation (IDF) (primaryimmune.org) so it can continue to work on finding better treatments and, someday, a cure.

Patients can visit the IDF website to order the Patient and Family Handbook for free at www.primaryimmune.org/…/idf-patient-family-handbook-pri… Love each other. Hold your zebra family and fellow patients, and always try to be zebrastrong.


Pamela S. McKinley is a common variable immunodeficiency patient and author of the Facebook Page CVID: Hoofbeats and Hope. She holds a bachelor of science degree from Arizona State University.

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Comments (2) -

Pamela McKinley
9:13 AM on Friday, April 06, 2018

I wanted to share the blog site for those interested!

https://www.facebook.com/cvidhoofandhope/

Tim Keppler
9:22 AM on Friday, April 06, 2018

I am proud to stand with my Zebra-strong daughter, Pamela!

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IG Living Blog | Financial Assistance for Disabled Homeowners and Tenants
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Dedicated to bringing comprehensive healthcare information, immune globulin information, community lifestyle and reimbursement news.

Posted on 4. October 2018

Financial Assistance for Disabled Homeowners and Tenants

By Louise Smith

IG Living Blog Image

Registering as disabled can feel intimidating for a number of reasons, with many of them revolving around potentially lost opportunities. After all, the American dream dictates anybody can achieve their goals if they roll up their sleeves and work hard enough. But, what happens to the unfortunate individuals who are betrayed by their own bodies?

Thankfully, the government is ready to step in and lend a financial hand to many disabled Americans. The Americans with Disabilities Act has helped countless people who would otherwise by hindered by physical ailments receive the same opportunities as their able-bodied compatriots. In addition, several funding streams are available to homeowners. Regardless of whether modifications are required to an existing dwelling or a disabled individual is seeking to be a first-time buyer, help is available.

Registering as Disabled

If you are curious about what financial aid you may be entitled to, you can use the Benefit Eligibility Screening Tool to assess your options. Remember that this portal is for information only; it will not sign you up for any benefit packages.

To be eligible for benefits, you will first need to register as disabled with the relevant government body. This is arranged through the Department of Social Security (DSS) that has its own judgment criteria for what it considers to be a long-term disability. The DSS will conduct an investigation to decide which benefits you are entitled to.

The basic payment package for any disabled American is Supplemental Security Income (SSI), which is payable to anybody. Funding for SSI comes from the government, acquired through taxes. In addition, many people will be eligible for Social Security Disability Insurance (SSDI), which is a private policy that provides money based on your own taxpaying contributions before becoming disabled (if applicable).

Know Your Rights

First and foremost, it's extremely important to know what disabled Americans are entitled to with regard to property. This largely boils down to the Fair Housing Act, a summary of which claims the following:

  • Nobody interested in renting a property or applying for a mortgage can be declined on the grounds of disability.
  • No disabled individual can be charged more than an able-bodied person for an identical property and access to facilities.
  • No disabled individual can be lied to about the facilities within a property, including how disability-friendly it may be.
  • No property owner may deny reasonable modifications to a property rented to a disabled tenant.
  • An assistance animal, such as a seeing eye dog, cannot be refused access or tenancy under a no-pets policy.

This means, for example, a wheelchair user will be able to request a ramp be installed to the front door of a property, or that doorframes are widened to match national recommendations, and a landlord will not be able to reject these requests. What you will notice, however, is a landlord is not legally obliged to pay for making a rentable property more accessible to a disabled tenant. Instead, any modifications are billable to the tenant, and the landlord can also insist the tenant cover any costs incurred by removing these modifications at the end of a residency.

Let's use a bathroom as an example. Widening a bathroom door to accommodate a wheelchair will not be a reversible job, as it will not impact upon the ability of the landlord or future tenants to enjoy the room. However, if the tenant installs grab handles in the bathtub to make it easier to climb in and out, that's a different story. Not only will the tenant be required to pay for this work (including any potential reinforcement of the bathroom walls), the landlord can also insist the handles are removed when the tenant gives notice of their intention to move out. Again, the financial burden for this labor is on the tenant.

Finding the money to finance these modifications can be problematic for many disabled people. Thankfully, a sizable number of grants are available.

Sources of Funding


General Assistance and Advice

  • Always discuss the impact of disability with Medicaid, as a policy may cover the cost of installing ramps and other home improvements to aid disabled Americans.
  • The National Directory of Home Modification and Repair Resources offers a state-by-state summary of the advice and financial support available throughout the U.S. for disabled homeowners and tenants.
  • The Benevolent and Protective Order of Elks is a body of community-minded individuals who run local community fundraising projects to assist those in need, including disabled Americans who may require home improvements.
  • The National Council of State Housing Agencies is a central resource for anybody wondering how to contact their local authority and seek the help they may require.
  • A USDA loan, designed for individuals with low incomes, can help with the of purchase a home. Disabled candidates are particularly likely to be looked upon favorably when applying. You can find your closest HUD agency here.

Grants and Charitable Ventures

  • Modest Needs offer grants to disabled persons in the U.S. to help any family ensure their home is disability-friendly.
  • [Re]Building Together is a not-for-profit venture that started out in a small Texan community and has now gone nationwide. This body calls upon professional builders and tradespeople to work on homes that require modifications, with particular emphasis on dwellings that house disabled Americans.
  • The Rehabilitation Engineering Society of North America Catalyst Project offer grants and loans in a variety of states to make necessary home improvements.
  • Anybody who suffers a disability due to an injury to his or her spinal cord should investigate the Travis Roy Foundation.
  • Habitat for Humanity, often simply referred to as Habitat, build homes for vulnerable or disabled Americans. Even if this is not an option, Habitat offers special payment plans for anybody who struggles to find conventional financing for a disability-friendly home.
  • The American Parkinson's Disease Association provides grants and funding all over the country to assist those with Parkinson's disease with home improvements.
  • Lions Clubs International, a charitable body closely linked with Helen Keller, offers assistance in home adaptation for individuals struggling with vision or hearing.

Help for the Elderly

Certain charitable bodies have been established to aid elderly disabled individuals. Advice and suggestions on how to make a home more comfortable can also be obtained here, or by consulting the American Association of Retired Persons.

The National Association of Home Builders also has suggestions on how to "age in place." However, it is not be able to assist with finances. For that, try the below resources:

  • The Department of Housing and Urban Development has devised the Assisted Living Conversion Program to assist senior citizens who require particular help with home modifications, particularly if they become disabled later in the life.
  • Anybody over the age of 62 and living in a rural area on a low income can apply for a Rural Housing Repair Loan or Grant from their closest state office of the United States Department of Agriculture. These funds can be used to finance any improvements that will make a home safer for disabled residents.
  • Investigate the Federal Grants Wire for more information on the many varied grants available to senior citizens.

Help for Military Veterans

Disabled individuals with a history of combat can apply for help from a number of sources. The previously mentioned Benevolent and Protective Order of Elks has a division dedicated to veterans, but there are a number of specialty bodies that offer grants to disabled military personnel:

  • The U.S. Department of Veterans Affairs should always be the initial port of call, offering two official government-sanctioned grants:
    • The Specially Adapted Housing Grant is designed to help disabled veterans live independently. This could be used to build a new disability-friendly home, make adaptations to an existing dwelling or make up any cost difference between two homes if a disabled veteran is forced to move to a more suitable accommodation.
    • The Special Housing Adaptation Grant is designed for wounded and disabled veterans who intend to remain in their current home and may require some financial assistance with amendments.
  • The actor Gary Sinise, famed for playing the role of wounded solider Dan Taylor in the movie Forrest Gump, set up a foundation in his name. The Restoring Independence Supporting Empowerment program offers grants to improve a home or build a new one to allow any military veteran to live in comfort and independence.
  • The Army Wounded Warrior Program, part of the U.S. Army Warrior Care and Transition initiative, is another resource of funding for former soldiers and their families who may need to make changes to their home following injury in service.
  • The American Red Cross takes great pride on taking care of veterans, active members of the military and families impacted by service for our country. If disabled while on duty, it may be able to offer financial help for necessary home modifications.

Summary

While this list has covered the nationwide help available for disabled individuals, there may be a variety of other sources in particular states or towns.

There is a substantial amount of help out there, and there is no need to face the difficulty of disability alone. Together, we are all stronger. Accept any available support to ensure your home is safe and accessible.

Useful Links

Below is a summary of the resources that are available to help:

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