Friday, April 5, 2013

Losing someone you love- slowly

As part of a writing class I'm in, we were supposed to write out own eulogies, from the point of view of a loved one, and another from the point of view of a coworker/ boss/ client. It was interesting timing, because I've been thinking a lot about my Dad, and what his life meant (and means still).

Dad is still around but we are losing him, a little piece at a time, to Alzheimer's. I live 800 miles away so I only see him a few times a year. When I'm back in my hometown I go see him every day for the 3-4 days I'm there. I take him for a walk, because I know how he loves being outside and getting fresh air.

What can I say about my dad? One day I will probably have to say something at his funeral.
My Dad is a very smart man. He has a PhD in physics. I used to ask him for help with my math homework- actually I only did that once or twice, because he would get so excited about the topic he'd go on for hours and hours. I was trying to get my homework over with and he was savoring it like a fine French wine.

My Dad had 2 sailboats and won a lot of races in them. I learned to sail at the sailing club where he kept his boats. He built furniture. He tried out for the Boston Braves (before they moved to Atlanta). He could fix anything. He coached my Y basketball team. He played the trumpet. He worked on cars. He built computers. He was an accountant briefly and was in the Coast Guard long enough to get the GI bill to pay for college, where he met my mom (who also has a PhD). He used to ride his bike to campus. He made his students work hard. He had a lot of interests: stamp collecting, building picture frames, baseball. He loved music and listened to it with a deep appreciation, not like it was acoustic wallpaper. And he had a great sense of humor. Everybody loved my Dad. Even when I was in 8th grade, when nobody liked any adults, my friends would say "Your dad is so cool!"

Now he is in a nursing home with Alzheimer's. He wakes up several times in the night thinking it's morning. He'll take 3-4 showers a day. He will forget to eat. He really needs the structure of the nursing home, and he's pretty happy there for the most part. The nurses like him and he gets a fair number of visitors. Once in a while he doesn't understand why he can't have his car keys.

He told me his ears were bothering him so I asked the nurses to get someone to clean them out for him. Turns out he had stuck a hearing aid *battery* stuck in each ear. Woah. And yet, he can still do quantum physics. And he still knows who we all are. What's really nice is how appreciative he is to see us, and how loving and sweet he is now. He wasn't like that when we were kids. He wasn't mean, he just wasn't openly affectionate.

I write him letters every week (he no longer can figure out how to do e mail), and my sister tells me he *loves loves loves* them. I try to keep them light and include a comic strips from the paper. He never writes back, but having my sister tell me he enjoys them means I will keep writing them.  When my Grampa (Dad's Dad) was widowed, I wrote him a few letters but he never responded so I stopped writing. Now I know he probably read them.

My mom is selling the house, so I inherited his record collection, which I am excited about digging through. It's strange to inherit things from someone who is still alive. It makes the loss very real. And yet he may live a long time. So, while he is alive and knows who I am, we have a chance to have the relationship we didn't really have as I was growing up. And although I'm sad to lose him, right now I have more Dad than I ever did.

Sometimes when people are given a terminal diagnosis, they hold their funeral while they are still alive. There was an old TV show called "This is Your Life" where they would honor people and reunite them with old teachers or other meaningful people in their lives. I would love to throw my dad a party and have people come tell him all the nice things they never got around to saying. But parties overwhelm my dad. So I guess I'll just put it in a letter.

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?"




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

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?

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
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.





Wednesday, February 27, 2013

"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?"

Tuesday, February 19, 2013

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?"