For the ones I love, please read…

On another note:

Today I am feeling like I may not ever make a difference with getting awareness out there. I’m feeling hopeless in this whole situation. Im not the kind that has ever given up easy, but lately, specifically yesterday and today, I feel like I am literally fighting a never ending battle. I’m sick of this damn CVID, I’m sick of people not giving one crap, I’m sick of the politics, I’m sick of being sick, and not getting answers.

Im making this as brief as possible, because I am beyond exhausted, still sick, etc.,

I have had abnormal visual problems, I have been seeing black spots in my vision at all times while outdoors, cloudy or not. It’s beyond annoying. I went to the opthomologist 2 months ago, his response, ” never heard of such a thing from any other patient ” yeah, go figure. He referred me to an opthaneurologist. After five hours, a ton of tests, and three specialists consulting, their final diagnosis, was “we don’t know”. Again, Go figure. This is why I am so sick and tired of the medical field. There professional solution, live with these spots drifting through my vision every day for the rest of my life and they are not floaters. And I am supposed to deal with this because, as usual, there are no answers.

Today, I went to our local CVID get connected meeting. I’m usually energized and feel so much better after our meetings, not today. As much as I want to raise awareness, it just doesn’t seem possible. The limits placed on us, the financial strain, the medical issues, and so forth are becoming insurmountable. There isn’t an agency, nothing, nor anyone, that can, will, or wants to help.

I watched two of my fellow cvid ers cry over their personal battles with insurance.  Insurance  hoops are a huge hurdle for us with CVID. They would rather us die, than receive treatment. I just feel like I may be at the end of my interest in these meetings.

I hear a lot of talk about folks wanting to raise awareness, but I’m also hearing a lot of excuses as to why we can’t. I’m also realizing that the powers that be, may have some of the volunteers hands tied. These “powers” that be is the only organization that can help. I think I’m beginning to see the politics involved even more, even with this admired organization.  It’s a money game for them, period. I first realized the extent of the political power at the National Convention.

Ive been sick, throwing up for two weeks, and have lost a lot of weight. I have no energy, my housekeeping and what some think is simple like preparing a meal, I haven’t been able to do, which in turn raises my anxiety….and my husband really is of no use and gets angry because of my limits.

im sick of being sick, I’m sick of not being heard, I’m sick of fighting, I’m sick of people ignoring me, just feels like a complete losing battle. I can’t be the cheer leader for change by myself.

Sorry so Grimm, but this is just the truth.  It’s all taking its toll. Honesty, it’s a realistic day of someone that suffers from an invisible illness, and it’s just one day in the life of someone that has a freaking rare disease.

“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.

What the “Spoon Theory” means

I was introduced to this idea, the spoon theory, about a year ago. Basically, if I plan on doing anything, I need to space it out, or not really make many plans at one time. If I get sick, I am no good for anyone. When i do to much I run out of energy, and get sick. It isn’t necessarily 1,  2, 3, 4 spoons per action. It depends on a lot. I put doctor visits, socializing, showering  and dinner at 4 spoons. But that’s just me.

I am infusing today.

I’ve moved my days to infusing to Monday, even though I should not infuse alone, it seemed more of a hassle with daughter seeing it and husband making demands that I am not able to do after infusing. Some people really do enjoy a good kick at you while your down. My problem is that I keep forgetting I infuse on Mondays, and I can’t do anything, afterward. It’s an all day thing, sometimes up to 72 hours. I have to do this the REST of my life, and there are so many times that I just don’t want to.

Challenges of Being a Parent With a Chronic Illness

All I ever wanted was to be a mother. And I can’t even do that right. It’s another loss in a string of losses. Challenges of being a chronically ill parent. Part One

“I am a bike rider. No training wheels”! Mom missed it 🙁

>Part One: Originally blogged: 10/25/15

My youngest, recently learned how to ride a bike, I was not able to see or teach her. She recently had a fall party at school. I always volunteered at school, until the CVID diagnosis. Schools are germ factories. I did not know how to tell her I would not be there to volunteer.

I did.
She accepted it.
After one year post diagnosis, I guess she is beginning to stop asking.
A poem that captures my feelings everyday…applied to my guilt and sadness of being a parent that has a chronic illness.

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