What To Do While Waiting to Get Diagnosed

Dear Carla-

I have been back and forth to my Dr for over two years. I asked for a blood test to check my thyroid. She ordered a full work up after wondering why I was taking all the meds (5 at that time). Every thing was normal except thyroid.

This past fall was the first time I heard the word fibromyalgia. In January I was referred to a rheumatologist, who ordered updated blood work. Now it shows a 36 sed rate on a scale of 0-15 for men and 0-20 for woman being normal. And a positive ANA. The nurse would not explain what this means.  My appt with the rheumatologist is not for another month.

I have not worked in 2 1/2 years. I used to be a flat roofer, extremely active. Nowadays, just going to the store or walking around the block will knock me out for a day. I'm 47 and I just want to know what is going on with my body and to know that i am not crazy.

Hello -
And thanks for writing.
You're definitely not crazy. Something is wrong and you know it.
And the tests confirm it.

An elevated sed rate means you have inflammation.
A positive ANA means you have autoimmune activity. In other words, your immune system is attacking your healthy tissues. It's possible you may have lupus. I do.

The wait time to see a rheumatologist for the first time is always unacceptably long, and I am sorry about that. I don't think health professionals have any idea what psychological burden it is to be in limbo, tired and hurting and having no idea what is going on and why.

What you can do right now is start keeping a symptom journal. Nothing fancy. Just every day, jot down:
- any symptoms (fever, joint pain, rashes, fatigue, etc.).
- your energy level on a scale of 1-10
- pain level, 1-10
- weight and temperature

Then, when you go to the doctor, you'll have a lot of helpful data to give him/ her.

While you're at it, write out your medical history. Jot down
- all the stuff that went on over the last couple years with your health
- any illnesses in your family (blood relatives: mother, father, siblings, grandparents)
- any surgeries or pregnancies you've had
-  a list of all the drugs, prescription and nonprescription, that you are taking now, and how many milligrams of each, how many times per day.

Try to have all that ready before your appointment. Type it up, print it out, and bring it in. Even if they don't read it, you can have it to refer to in case your mind goes blank when they ask you questions. If you're lucky, they will read through it and put it in their chart.

Collecting this info is something you can do now while you're in limbo waiting for your appointment. It beats sitting around doing nothing, and it will very likely help you get the right diagnosis faster. In my book, getting the right diagnosis is so important- then you can figure out what to do next. Once you have your diagnosis, you can either go down the route of medications, or pursue alternative medicine and/ or nutritional changes. But getting diagnosed will keep you from doing something that might make things worse. Knowledge is power.

You can get your health back. I got mine back. It's all possible.
Just do what's in front of you. Pray if you're a praying person- ask to be given excellent help and the correct diagnosis and the next right step. And collect the data. And do something fun to distract yourself from your worries. That's what is in front of you right now.


Wishing you all the best-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
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http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?

View from the other side of the hospital bed

This past week, I've been on the caregiver side of the equation, rather than the patient role I've often found myself in. My husband was in the hospital for several days with pulmonary embolisms (blood clots in lungs) and last week I also visited my dad, who is in the nursing home with Alzheimer's and kidney failure (he's been on dialysis for years). I learned some things.

1) I'm a good patient advocate, because I know firsthand what it's like to be very uncomfortable. So when my husband asked for earplugs and I said "sure, but... why?" he told me his roommate, who was very sick but also delusional, was up all night moaning and shouting "hello?" because he couldn't figure out how to use the call button... I thought "what would I want in this situation?" (and I've been in this situation. I had a roommate who turned the heat up as high as it would go, and was deaf as a doornail and had visitors constantly, and complained loudly all day "I have pneumonia, I have  pneumonia." Meanwhile I'm thinking "I'm on immune suppressants- I don't want pneumonia!" ). What did I want for me then, and Joe later? A different roommate.

I went to the nurses' station, explained the situation and nicely asked if there were a bed in another room we could move to. And they did it, right away, no problem. When my dad told me his ears were clogged, I went to the nurse station and asked for him to get an ear cleaning. He told me his shoes were too small, so I asked my mom and sister to bring him different shoes and/ or take him to get a new pair (I was on the way out of town as he told me this). It's easier for me to ask for these things for other people than for myself, but I have had to learn to speak up over the years rather than suffer in silence and resentment. Most people can't read minds. And for the most part, that's probably a good thing.

2) Remember when you go to visit people, it's not about you. It's about them. Think "How can I be helpful?" Just listen? Bring something? Ask them if they need anything from the "outside world?" Offer to run errands or pet-sit?

3) Set the tone. When I go to visit my dad, I always walk in and say "Hi Dad!" That does 3 things- gives him a clue I'm one of his daughters, just in case he's confused (so far he always knows it's me) and it frees him from having to initiate the conversation, and sets a nice cheerful tone. I decide before I go in that I'm going to have a good visit and keep an eye out for anything he needs that isn't being tended to. I often take him out for a walk outside. He loves being outside. And it gives me a good gauge on how he is doing physically. He was much weaker this time, so I could tell he hadn't been getting much activity.

4) Taking time to visit someone and lift them up or help them in some way can be really rewarding. But you have to remember to take care of yourself too. Still get sleep, regular meals, and downtime. You can't give from an empty well. And if you're someone with a chronic illness, you need to be mindful of not spreading yourself too thin energetically.

5) Short visits are better than no visits. You don't need to invest your whole afternoon visiting someone. In fact, short visits are better because sick people get worn out and sometimes feel they need to be "up" and on good behavior and cheery for their visitors. Whenever I leave my Dad, I say "Well, I gotta go," and there's no drama. He just thanks me for coming by and absorbs himself in a magazine or TV.

6) Do what you're good at. If it's running errands, or bugging the nurses for things that were neglected, or asking the doctor questions, getting on the grapevine and asking others to help out, bringing a dog to visit (if it's allowed), or just being there visiting- find what you have to offer and do that.

It took me a couple visits to my Dad before I learned how to visit him and not feel awkward or sad, but now that I've figured out how to visit him, I look forward to it. He's sweeter and mellower than ever before, he's so appreciative of the visits, he tells me he loves me, and he has all the time in the world for me. And he always asks how Joe and I are doing. Dad wasn't like this before. He wasn't mean, just kind of preoccupied. So, in a way, this time with him is a gift. I remember when his dad died, my dad said he regretted never telling him he loved him. Because my Dad is slipping away so slowly, there's no reason to not be able to say anything that never got said before.

I'm sure I still make mistakes, but I've gotten much better and far less afraid of visiting sick friends and relatives in the hospital and nursing homes.

I'm sure there's more to say on this topic, lots more. Maybe some of you have some thoughts and suggestions to offer on being a good visitor/ patient advocate?

Carla Ulbrich
The Singing Patient
www.youtube.com/user/carlaulbrich


Here's a tune from one of my stays at a much less hospitable hospital. Forget bingo- I couldn't even get a decent blanket.

"What Would You Do?"

A reader writes in and asks what I would do in her circumstance.

Hello Carla-

I am 34 year old mother of 3. I've been hypothyroid since I was 18.  I came down with an unknown virus in December that gave me severe leg muscle aches, 102 fever, and chills, followed by an itchy rash. I was given a steroid.  

I still had symptoms coughing up mucus. A "minute-clinic" doctor put me on an antibiotic. I started feeling better but at some point noticed my fingers felt like I had hurt them playing a sport.  I have  stiff feet in the morning and when I wake my feet, knees, and hands are rebelling. I saw my doctor Feb. 2 and she wasn't concerned but ran an arthritis panel, nothing came back abnormal except ANA. 

She said she saw no reason to send me to a rheumatologist if ibuprofen is working because she didn't see anything going on.  In other words, no other symptoms of any autoimmune diseases.  My family and I are now trying to cut out gluten.  I did develop psoriasis after the birth of my second child. 

We are working on my thyroid levels, and waiting to see on the ANA.What would you do?

Hello!
Thanks for writing. I will attempt to be as helpful as I can.
I am not a doctor but I have 20 years' experience living with 4 autoimmune conditions and I have tried everything under the sun- mainstream and alternative, and some of it has helped tremendously.

Looking at the bigger picture, I do see autoimmune, as psoriasis is an autoimmune disease. And some forms of hypothyroid are also autoimmune. (Do you have Hashimoto's?) It is not uncommon, once you have one autoimmune disease for others to appear at some point.

You ask what I would do.
I would do anything for my health, and I have. I've got acupuncture, chelation therapy, had my fillings replaced, chiropractic, massage, lymphatic massage, energy medicine, psychotherapy, prescriptions, physical therapy- the list is long.. But in the end, the long-term things that helped the most (and cost nothing, except for the blood test) were doing chi gung and changing my diet: I cut out gluten and dairy (and nutrasweet, eggs and bananas) after having food allergy tests done. These were not pin-prick tests, which check for immediate reactions, but a blood panel that checks for delayed reactions. If I accidentally eat dairy (party/ restaurant) I know because my tendons flare up. If I accidentally get some gluten, I know because my joints swell and hurt. And if i want a migraine, give me MSG or nutrasweet. Just one life saver with nutrasweet, that'll do it.

I don't know where you live, but try calling/ e mailing Dr. Mark Hyman's office and see if you can get an appointment or a referral to a functional medicine doctor. That kind of doctor will look for and remove underlying causes of symptoms, rather than just relieving symptoms with drugs. Sometimes it's allergies, sometimes vitamin deficiencies. If you can't find a functional medicine doctor, try an osteopath. Ask around for a recommendation. Also try ACAM, http://www.acamnet.org/

Call a yoga studio or health food store if you have to and look for some leads on effective knowledgeable healers. Decide if you want someone to get to the bottom of this. Once you get clear on that, then don't let up knocking on doors and asking questions until you're satisfied with the answers you get.

That is what I would- and did- do, and I got my health back.


I believe we were not meant to suffer. We simply live in an unhealthy environment and we have to learn to protect ourselves and be healthy despite some of the things around us that are working against that.

Well wishes-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Benefits of Laughter

You all probably know I'm a huge fan of humor and laughter. Thought I'd share this infographic with you, courtesy of www.greatcleanjokes.com

By the way, if you're really into learning more about the benefits of laughter and hang around some of the people who are working in the field of laughter study, check out this great organization: www.aath.org or this one www.thehumorproject.org . Each organization has annual gatherings of wonderful folks from all walks of life, and I've attended and greatly enjoyed each.

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Prednisone vs. the killer rash Part 2

In the great battle of Prednisone vs. the killer systemic rash, the prednisone has WON! My rash has pretty much disappeared. As has my prednisone. I took the last one yesterday (it was a 6-day pack where you take 6 pills on day 1, then 5 on day 2, then 4 on day 3, etc.).

These last couple days I was getting headaches from prednisone withdrawal. I knew that was what it was because I've been through prednisone withdrawal several times now. Three times I've been on prednisone for 9-12 months to control lupus, which was attacking my kidneys, lungs, heart, you name it. And every time we cut the dose, I'd feel like crap for 3 days. If we cut it a lot, like from 40 to 30 mg in one swoop, I'd feel like I had the flu for a few days- achy, exhausted, sleeping 14 hours a day. So, it's good to just remember "Oh yes, it's just prednisone withdrawal. It's not me getting sick again, or getting something else. This will pass." And yeah I took an Advil yesterday for the headache. I'm not a martyr.

Yesterday I took my last prednisone pill of the 6-day pack and today I did something I *never* do- I took a nap. For an hour. I really didn't want to get up, with my sweet little furry friend curled up by my chest (the dog, not my husband), but we had a valentine's dinner to go to (with the hubby, not the dog), and anyway if you nap too long, you can't sleep at night. Boy those little furry friends can relax you right to sleep.
Here's our dog making sure my hubby gets a nap:

Before the withdrawal, I got to enjoy a couple days of prednisone mania. Some people use the mad amount of energy prednisone can give you to clean the house. I used mine to write 2 ridiculous songs, start 3-4 other songs, and finish and record one other song I've been working on. This is the fun part of prednisone.

The not-fun parts of prednisone, of course, are the withdrawal, and, if you stay on it long-term: hair loss, weight gain, mood swings, osteoporosis, cataracts, diabetes, insomnia (already have that, pass on having even more thanks!), and that lovely moon-shaped face. I can't believe I'm about to do this, but here are before and after pictures of me on and off prednisone.  I actually weigh *less* in the prednisone picture (the middle picture) than in either of the others. I'm about 95 pounds in the prednisone picture, but the drug puffs my face up so much I look like I weigh 500 pounds. I considered putting pictures like this in my book, but my publisher (probably wisely) decided against it.

Carla before prednisone:

during prednisone (obviously, no makeup):

after being off prednisone for a while (also no makeup):

After having my looks altered this drastically once, you can only imagine how desperate I'd have to be to ever go on prednisone again. But I did. Two more times. I resisted every time because of these effects. It always came down to the realization that I would die if I did not take this drug. So, I owe it my life. But I always do everything I can to not be on it long-term, and that's why I'm on a gluten-free dairy-free, no egg, no nutrasweet diet. Those are my food allergies and if I avoid them, my disease stays quiet. And I don't need prednisone. Unless of course something happens like this past week and I have a severe allergic reaction to something else. But that's short-term prednisone, and I can deal with that.

I've said this before, but I feel it bears repeating: if you are on prednisone, do NOT EVER suddenly stop taking it. Prednisone replaces a hormone that controls your vital organs and there is a lag time between when you stop taking it and when your body starts making it again. This is why you MUST taper off the drug slowly, or you will go into crisis and end up very sick or dead. Or worse, on even higher doses of prednisone.

Well wishes to you-
Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"