Friday, March 22, 2013

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 Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?

Thursday, March 14, 2013

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

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.