A Child’s Perspective of the AHCA and Becoming an Orphan

The affects #AHCA and what it is doing to our children, is cruel, inhumane, and is mortifying to the children who will be orphans.

I blog a lot about legislation, being informed, proactive, and have personally fought as much as possible to live. I am not convinced that the outcome will be as I, and many others had hoped.
What the #AHCA is doing to our children, is cruel, inhumane, and is mortifying to the children; whose parents will be left without life sustaining treatment. The fear of becoming an unwilling orphan because of the Pre-existing exclusions of the #AHCA, is a reality for children of the chronically ill.

Children who live with a chronically ill parent are different than other children. They certainly are very aware that their parents and lifestyles are different. My child confided last night that the politics scares him horribly, that the government will do horrible things to his mom.

Our home does not have TV, and is not exposed to the constant morbidity which the news would bring. We are living in a new generation, kids are exposed to a myriad of research via online. As well, my child attends school with other children whose parents are medical field professionals, of all types. The children talk. The children are terrified. The children are victims more than anyone. They are facing the reality that they will lose their parent. In my case, this is true, as without the IGg that I receive, My chances of living to see my child’s 8th grade graduation are slim.

Six months ago, the last thing we were concerned about was when my life sustaining plasma would be discontinued. We had our own way of normal. It certainly was not a constant non-stop worry about when the ax will fall. I asked my child why he didn’t tell me of his fears. Well, the stuffed animals listen to his fears and worries, and he reads the Bible. He doesn’t want to know any more bad news. Although, it looms over his head non stop. I’ve seen the withdrawal from regular playmates, the animosity of why his mom sick. The actions of how can this happen to the one he loves more than anyone, his mother.

Tonight, he came to me, laptop in hand. Said, “please listen to this mom, this is you. This song describes the USA, and what will happen” and sang it. Tears in his eyes, as I choked back my own tears. I wrote down the name of the following song titled, Sign of the Times by Harry Styles.

If your chronically Ill, you will relate to this, on many levels. I returned to tuck him into bed, and he was then reading the lyrics to the song. I had to tell him, “please don’t listen to this before bed”. As he was choking on the words. Our children, who do not in a million years deserve this agony. Our job is to protect them, comfort them, and give them as much security as humanly possible.

There are many metaphors within this piece, what strikes me, is the lyrics, “Someome whose going to die but was afraid of death whose not ready to go away”. The Sign of the Times, was debuted on 4/17, album released 5/12.
*No endorsement of the artist or song intended.

April is Primary Immune Deficiency Awareness Month

year, we were visiting local plasma centers, thanking donors, and participating in the PI Community. When you feel isolated and alone, your entire life with illness and denial from all facets–it was only appropriate that there was a communal “ah-ha” moment where others identified…

Primary Immune Deficiency Awareness Momth is the entire Month of April!


Until next time!


Common symptoms that go Undiagnosed for Decades

Common symptoms that may help answer your questions as to why your sick all the time

Illnesses, and symptoms, that I have experienced over the course of my life, pre and post diagnosis are briefly detailed here. I’m currently experiencing a horrible bout of chronic sinusitis, third course of antibiotics, and no end in site. Which is why I thought briefly detailing what seems to be common illnesses, may not be that “common” and if you experience the following, ask your doctor to run an immunoglobulin test its a simple blood test to see if your immune system is functioning correctly. Or contact the IDF for resources.

  1.  Chronic Sinusitis—takes longer to clear, does not clear in one course of antibiotics.  This is a big indicator that something is not *right*.  According to the latest statistics, “Prevalance of Sinusitis: Health care experts estimate that 37 million Americans are affected by sinusitis every year. Health care workers report 33 million cases of chronic sinusitis to the U.S. Centers for Disease Control and Prevention annually. (Source: excerpt from Sinusitis, NIAID Fact Sheet: NIAID)”

WHY is this important? Look at these numbers, 33 MILLION-cases a year, now, the patients are being treated, re treated, and continue to suffer DECADES, when they *may have an immune Defeciency, yet the patients are left to suffer, and are never informed there may be more to their Chronic Sinusitis.  I will touch more on this topic as the blog progresses.

2.  Bronchitis: NON smoker, or Smoker, wether brought on by a virus or bacteria, it always becomes a case of chronic bronchitis.  Symptoms include shortness of breath, especially with exertion, and a loose cough that produces large amount of phlegm or mucus, or deep cough without production of mucous  People with acute bronchitis may also have wheezing (a whistling sound made with breathing), *fever (some PI patients RARELY run fevers) fatigue, and chest tightness or pain that occurs with coughing. Inhalers, steroids, antibiotics are needed. Often the bronchitis cough lasts for weeks. There are many other symptoms, so please don’t rely on just these. If you tend to get bronchitis often, this may be an indicator of a poorly functioning immune system.

Prevalence of bronchitis Incidence (annual) of Acute Bronchitis: 4.6 per 100 (NHIS96: acute bronchitis); 14.2 million cases annually.  14.2 MILLION cases annually, again of this huge number, how many people are going misdiagnosed and or undiagnosed due to medical ignorance in the field of immune Defeciencies.

3. Ear Infections:  Also extremely common with those with immune systems that are not working properly.

4.  Pneumonia:  Many people with an immune Defeciency suffer from Pneumonia, and require invasive treatment to get well. Sending an immune compromised patient home with an antibiotic, will only land the patient in the hospital fighting for their life.

5.  Autoimmune Problems:  This can occur throughout any organ in your body. The bodies immune system does not recognize itself and instead, attacks and destroys any organ or system. Prior to diagnosis, my body destroyed my intestines, my thyroid, my lungs, my heart, and my joints, to name a few. I had all of these different ailments, no one could connect the dots. Lupus is also very common with CVID.

6. ZPacs are ineffective for a person who has an immune Defeciency.

7. You may not develop fevers, unless you are so ill, you may be near death before your body responds with a fever. This is variable for a lot of patients, but studies are coming out indicating most of us don’t run fevers very often.

8.  Often labeled a hypochondriac and referred to psychiatrists.

9.  Basic CBC bloodwork shows abnormal albumin or globulin (if so, this is a HUGE indicator that you need to find a clinical immunologist, do NOT believe what your trusted primary tells you. I did, and wasted two years believing her. If you basic blood work shows any abnormality in these two categories, insist on an immunoglobulin blood test.

10. Unusual and serious hospitalizations, without ever getting a true indicator as to your diagnosis.

11. Being misdiagnosed with sarcoidosis.

12. Extreme fatigue.

13. Gastrointestinal problems.

This is not an all exhaustive list, as there are many more factors, when actually diagnosed. However, these are the MOST common physical illnesses that I have encountered all of my life, and from others who also suffer from primary immunedfeciencies, or CVID.

“Spoonies” have heard and do not want to hear the following….

Can you define what an INVISIBLE IlLNESS actually LOOKS like?

Here I describe the spoon theory, and I guess I am what someone would call a “spoonie’ if they knew what it meant.  Personally, I’ve heard them all, and then some. People are well intentioned by stating some of the following, but in reality they just don’t get it. The one I hear the most, is “But you look great”.  Well, I respond, politely, thank you. What were they expecting to see? If they could peel my skin off, maybe it would be different, as everyday is a struggle. No one is around when your have so much mucous draining, that I’m throwing up, or when I look and smell horrible, because of the recent germ, or because I don’t shower as I should. Again, look at the spoon theory.

I made the horrible mistake of saying the same thing to the first person I met with CVID, now I totally regret my thoughts and words. I told her how great she looked, eee-gad, what a dumb, thing that I said. Now I get it, but then I was still trying to figure all of this out.

When your diagnosed with something so rare that even doctors avoid you, it’s kind of hard to accept the new way of thinking, that is your new life. It’s a complete metamorphosis, a complete change in every aspect of ones living.

People just don’t get it. It’s so terribly difficult to explain. I want to raise awareness, but I am just one person. What can I do?

Hopefully, I will find my calling, hopefully I can make that change. Every time I get a great idea to add to my bucket list of raising awareness, I get sick again. All my energy is zapped. Cognitively, I am not able to do what I used to. It’s the new me. The me still in the making.

I sometimes wonder, why was I doomed/destined to have this CVID. I do question it a lot. There are no answers. Maybe someday, I will have an answer though, because every once in a while I get a glimpse, of what my new life means. So onward to the post below adapted from

28 Things NOT to say To a Spoonie

In 2003 writer Christine Miserandino published an article on her blog “But You Don’t Look Sick” called “The Spoon Theory.” In the post, she recalled a dinner conversation where she explained to her roommate what living with lupus was like. Miserandino used spoons to measure her energy level and ability to carry out daily tasks. After the article was posted, many individuals with chronic illnesses like lupus began using the term “spoonie” to identify themselves.

Natalie van Scheltinga, who has Hashimoto’s thyroid disease and fibromyalgia, started the Facebook page “Spoonies for Life” in February. It’s become a community for spoonies everywhere to connect and share their stories. “We can find some comfort with each other and know we are not alone,” van Scheltinga told The Mighty.

In addition to lupus and fibromyalgia, chronic illnesses include Lyme disease, rheumatoid arthritis, Crohn’s disease and diabetes, among others. Many chronic illnesses are considered invisible and therefore difficult for others to understand. This, unfortunately, leads to some awkward, uncomfortable, sometimes downright insulting moments.

So, The Mighty teamed up with Spoonies for Life and asked their community what they wish others would stop saying to them with regard to their chronic illness. Here’s what they had to say:

1. “Stop being a hypochondriac.” — Amanda Ward

2. “If you eat all organic foods and a balanced diet, you won’t need to take medications.” — Caroline Freeze

3. “Get more exercise.” — Betina Jackson

4. “Oh I know someone who had that, but they’re fine now!” — Nina Leach

5. “Why don’t you want to go out?” — Connie Elliott

6. “You don’t look sick.” — Jessica Lynn

7. “Have you tried thinking positively?” — Amorie Spangenberg

8. “You were home all day… so what did you actually do around the house?” — Christie Pollock Taylor

9. “You can’t feel bad all the time. It must be in your head…” — Norma Conti Mcdonald

10. “I know how you feel.” — Estelle de Mol

11. “Oh, but you’re too young for that.” — Megan Geromichalos

12. “My 4-year-old daughter often says to me, ‘Mommy, I wish you weren’t so tired all the time.’ That kills me.” — Liz Brown Culver

13. “If you’d just lose weight your problems will go away.” — Paula Cohen

14. “When older people say, ‘Oh, you have achy joints? Wait ’til your my age!’” — Sunny Rene Banks

15. “Just push through it.” — Heather Lauren

16. “Have you asked your doctor for better pain meds?” — Norada Thomas

17. “There’s always something wrong with you.” — Nichole Mack

18. “From my husband: ‘When do you think you’ll be ready to work again?’ (Never)” — Penny Yale Wood

19. “Well, you do take a lot of pills!” — Sandra Beutels

20. “You get a disability check? Why? You look fine.” — Renee Thomas

21. “Oh, I hurt too! My (insert body part) is killing me.” — Kris Whitak

22. “I’ve just been down with a flu, so I know!” — Silje Liv

23. “I had someone who is supposed to be a friend say, ‘You are stronger than you think.’ This really made me ill. As a spoonie we all know the struggle, fighting day after day for years. We are strong but they will never know our fight. Some days I think I will never survive, when every part of my body hurts.” — Marsha McMahan

24. “I saw you out of your wheelchair yesterday, so why do you need it today?” — Joy Quinn

25. “You should go off all of your meds and detox.” — Veronica Belback

26. “You don’t look like you’re in pain though.” — Paula Wood

27. “As someone with epilepsy I hate when people tell me, ‘Oh I understand, my dog has seizures.’ While I love my dogs, I do not like my struggles being compared to that of a dog.” — Keti Theon Kharis

28. “Have you tried (insert treatment they found in a generic internet search)?” — Sarah Leanne

Read more: http://themighty.com/2015/11/28-things-spoonies-wish-others-would-stop-saying-to-them-1/#ixzz3qXomWIWj

5 things you shouldn’t and should say to your doctor

There is certain what I call Doctor speak, which is pretty much slang or Doctor esse, for a variety of topics when communicating with the medical field. Most times, its down right frustrating, dealing with the many MD egos. When you know your own body, but they are the bridge to you getting the treatment, management, or even diagnosis. That said, we, as patients, need to understand how to effectively communicate with them. I was, and still am, very gun shy when it comes to doctors. If you do not feel comfortable, or your needs are not being addressed, look for a new doctor. Continue looking, there may be 1 doctor of 500, but you have to be your own advocate. Otherwise, patients will, and are, dismissed in some of the most sadisitic ways. I have found ONE specialist, that listens, understands, and actually goes above and beyond compared to other docs., so keep looking, keep researching, keep interviewing. It’s nerve wracking, for sure. You are the informed patient.

The following article, is helpful, as to how to communicate with a doctor, not that it’s an end-all, be-all, and I certainly made some of the same mistakes. Also linked.

Five Things Not To Say To a Doctor

1. “Here Are Some Things You Should Read!”

The last thing many doctors want to see is a patient who walks into the examining room carrying a stack of paper — news articles, journal references, Internet printouts — to share during the appointment.

Some doctors actively make fun of this — calling patients the petits papiers (“little papers” in French) people. Others are quite obviously intimidated and threatened by — even hostile toward — knowledgeable and informed thyroid patients. Some are genuinely willing to read and explore things you want to share…but they simply don’t have the time to do so in a quick appointment, while still providing provide you with a thorough office visit.

Solution: Pick a few of the most important items you want to share, and send them to the doctor at least a week or more ahead of your appointment, along with a note explaining which aspect of the material you would like to discuss, and indicating the date and time of your upcoming appointment. And if your doctor is threatened, it’s time to find a new doctor.

2. “I’m Tired / I’m Fat / I Can’t Lose Weight / I Just Don’t Feel Well”

It’s great to have a friendly rapport with your physician, but remember: your doctor ‘s appointment is not a gripe session with a friend.

While it’s totally appropriate to whine over coffee to a friend that “I don’t eat a thing and I’m a blob!” or “I feel like I could sleep 15 hours a night, and I am still exhausted” this is not an effective way to communicate with your physician. When you describe your symptoms in an emotional way, there may be a tendency for the physician to view those symptoms as emotional in origin, or, in doctor-speak, as a somataform disorder. And you might end up with a prescription for an antidepressant, or advice to “exercise more,” instead of careful evaluation of your thyroid.

Solution: Quantify, quantify, quantify. And do it calmly. If you can take a rational, unemotional, scientific approach to describing your symptoms, you may find that the doctor takes your concerns more seriously. For example: “Doctor, I’ve been sleeping 8 ½ hours every night, and yet I still need a nap when I get home, and before I make dinner.” “I’ve kept track, and I’m eating 1500 calories a day on a low-fat, carb-controlled diet, and I walk at least 2 miles on the treadmill five times a week, and yet I’m gaining about 1 to 2 pounds per week.”

3. I’m Sure I Have _____

Even if you suspect that you may have particular condition, it’s not a good idea to declare in an appointment, “I’m sure that I have ____.” For some doctors, this is the key symptom of “cyberchondria” and can make your doctor immediately skeptical about your self-diagnosis — or even outright resistant to your theory, even if you may be right! Some less than enlightened doctors have even referred to patients derogatorily as Googlers.

Solution: Reframe the way that you present your suspicions. “Doctor, I have symptom a, b, and c, and I’ve heard that these may be signs of disease x. Is that something we might explore?”

4. I Read About This on the Internet

When you want to explore a new idea or treatment approach with your doctor, it’s often not a good idea to mention that you read about it on the Internet. While there are many legitimate sources of information on the Internet, a surprising number of practitioners — especially those who are not especially Internet-savvy (and yes, they do exist!)– have a negative view of the Internet. Even though the National Library of Medicine and the world’s major medical journals are all online, you’ll still hear doctors say “The only thing on the Internet is snake oil” or “you can’t believe any medical information on the Internet.”

Solution: Provide a citation, whenever possible. As in, “There is a doctor in New York who is treating patients with …. ” or “there was an article in the Times that talked about…” Or “I saw a summary of this study from the New England Journal.” Even if the Internet was the first place you learned of the information, when you bring it up with the doctor, do your best to share the origin of the information, rather than “I read on the Internet that…”

5. I’m Not Taking Anything…

Frequently, I hear from patients who say “I’m not taking anything else” when their physician asks: “What other medications or supplements are you taking?” But they are misleading the doctor, because they are sometimes taking medications prescribed by other physicians, or even self-medicating with prescription medications they buy from abroad without a prescription. And frequently, patients are taking vitamins, herbs, minerals, and other supplements — again, often self-prescribed, or on the recommendation of holistic practitioners, or even clerks at health food stores. The problem here is that certain prescription drugs and supplements can interact with your thyroid medications , making them less effective, or even have the ability to worsen your thyroid condition.

Solution: Make a list of all your prescription medications and supplements, and share them with all of your physicians and practitioners. And if you don’t have the kind of relationship with your doctor that allows for this sort of crucial exchange of information, then that’s a clear sign that it’s time to get a new thyroid doctor.