I see Sunshine on a Cloudy Day!

Even though it may be cloudy outside - I can see the Sun, I can see clearly - Things are going to get better!!

Today is the day I have been waiting for seems like forever to get here. The almighty appointment with the Famous Dr. Buckner - You may not know her yet, but the patients of RP do. People have traveled from as far away as India to have an appointment with her, I am lucky enough to have her in Seattle at Virginia Mason. She sees patients once a week - Tuesday Mornings the rest of her time is to research Relapsing Polychondritis.   She is the 7th Doctor in 1 year that I have had to see,  I am hoping the last I will have to see - in this LONG journey. I can not say enough good things about this Doctor. What impressed me most is she actually had read my medical records prior to my visit, she knew all about me even before I said one word - how often does that happen - NEVER! Unprepared Doctors are the worst! She listened to my concerns, she examined and she explained the plan - there was no rushing out the door to her next patient, she was mine for the hour I was there. She thanked me for having all of my records to her for her to review - again how many Doctors thank you? She understood what I have been going through and told me to look around her waiting room when I left - you won't be able to tell which one has RP,  people can live a normal life without the fear and doom that you read about this disease. Don't believe the literature you read, patients diagnosed with RP have a 5 year life span after diagnosis - She said alot of her patients were diagnosed 20 years ago and still live a active life. - This is exactly what I needed to hear, at that moment the clouds broke loose and I could see the sun shining even with the gray Seattle clouds..   I was explained the treatment options  and why she wanted to start me on MTX  - It is the middle of the road drug , safe and  if we have to move up or down in the drugs, there is some wiggle room. So that is where I begin -

The Treatment plan:
MTX Methotrexate - It is a chemotherapy drug usually used for breast cancer - my dose is much lower then that - it is also used for autoimmune diseases which is why I will be taking it. I will take this with Folic Acid which is suppose to counter balance some of the side effects. Dose will begin at 3 pills 1 time a week for the first 2 weeks, 3rd week will move up to 4 pills.  Side effects are nausea, fatigue, hair loss, abdominal pain. I am hoping for none of the above...
Because MTX can cause issues with the liver I will begin blood tests every 6 weeks to watch my levels - They are very strict about this, Dr. Buckner said they will not refill the MTX unless this has been done - so I will be a good patient and follow the Dr's orders..
Every 6 months I will have RFP and CT of the Trachea to track any changes - prayers for this one...

One of the things I was not so happy with today,  the additional diagnosis of Lupus tacked on - I thought I had escaped that disease, but Dr. Buckner feels that not only RP  but Lupus is also involved. Dr. Buckner explained  it in medical termas - but basically  RP can bring lots of friends to the party - this is my explanation not hers..  My labwork indicates both diseases even though I do not have all your typical Lupus indicators like the butterfly skin rash, the symptoms my body is having are Lupus indicators.. For example even though I love the Sunshine - my body no longer can tolerate it - the last 2 days in the sun - killing the old bod right now.. This is a Lupus indicator - she tried to explain it -  but at that time I was not comprehending anything, what it sounded like is - the sun breaks down something in my body and this causes inflamation in the joints ?? something like that??  She told me hat, sunscreen and look into UV sunscreen clothing - OMG!!  Well, we stopped at Nordy's for a cute sun hat, but the UV clothes - NOT YET!! I will put the sunscreen on faithfully, there goes my tan   :( and I will monitor the sunshine  - so much for afternoon gardening. Hawaii, Arizona, Guess it is a good thing I live in the NW after all!!  I will enjoy my Sunshine on cloudy days...

My diet is still no red meat and as little dairy as possible - this helps the throat issues some.  I eat chicken fish and veggies and fruit - limited bread and sticking to it...

Thats it for now - I will post after my first dose of MTX so I can track symptoms.

Thanks for reading.

God Bless us all.

Nancy

You don't look sick....

Earlier today browsing the internet I ran across a blogger  that posted  - he had seen someone wearing a T-shirt that said " But you don't look sick"  He posted a question - "Why do we have to prove our illness?"

Words are a funny thing, they can be heard by someone and twisted into so many different things in your mind - When people say "but you look so good"  - I know they mean well, but I just want to cry why is this happening with my Damn Body!  or when someone tells me " You just don't seem your happy self" I am trying, but Some days I am barely holding it together - I am not myself - I am scared!  I hate this disease and how it is changing my life - the Dr's, the testing and what can happen next - Today I looked up how a person would perform an emergency tracheotomy - REALLY!?! - I HATE that this is something I have to think about.

I know that I have not posted for a few weeks  -  I have been avoiding all of the venting that is needed..
Since the last post I have had a high resolution cat scan of chest and trachea - The findings were;
Signs of air trapping in lungs, which is normally a sign of asthma - They also see that I have narrowing of the trachea - This information was given to me by my Rheumatologist who told me she was not sure what medication to put me on and she needed to talk to a throat specialist first - I saw her on Thursday she told me she would call me with information the following Monday - Monday, Tuesday, Wednesday, Thursday, Friday - no call from her - Friday afternoon I call and leave a message - the following Monday (11 days after my appt)  about 11:00 a.m - I finally receive a call - which has now led to a referral to a Otolaryngologist @ Virginia Mason. She tells me they may want to take a biopsy of my ear to get a more definitive diagnosis - WHAT?????  Ok so what the hell was the blood work, the Cat scan and every other bloody test I have had done - what has that diagnosed - I am not a lab rat that you can just keep poking and prodding at your every whim....  So I am taking control once again - I have requested my records be sent to Dr. Buckner @ Virginia Mason who actually people from My RP group go on and on about - people from all over the world have come to see her and I am lucky enough to have her here in Seattle.. Problem now is, Dr.Buckner's office needs to review my records before they can schedule me - it has been 2 weeks since my request for records, they still have not received them from the Rheumatology office..... one of my RP friends has told me to go to the office and not leave until they provide them - this may be happening if they do not send them this week -
I need someone that knows and understands this disease it is obvious now that the Rheumatologist does not know or understand this disease anymore then I do  - this is my life and I want the controls back now...... This waiting game on a disease that is progressing just is not working for me.

I meant for this blog to stay positive and upbeat  - unfortunately I think it will see the ugly side from time to time.  I know I need to rely on my faith to help me through this, I also think venting from time to time helps too...

Thanks for reading..

God bless us all

Nancy

B+ vs B-

It has been 3 weeks since the life sentence was handed down - Trying to keep a positive outlook can be hard when you still are waiting on results from tests and more Doctor's appointments - Patience is not one of best virtues, but keeping a positive mind set is, so I guess they even each other out.
On my bad days I do wonder what I did to deserve this, the thoughts of what this disease will eventually cause havoc on -  which brings the tears and negativity. So is the solution to just ignore the possibilities and just live life to its fullest each and everyday?    I unfortunately can not ignore the possibilities - that is just my nature to research things. But I can try to find that silver lining each day.

I have appointment with the Pulmonologist on Monday - Rick is coming with me to the appt. I am hoping to finally get answers to what is going on with my cough and wheezy feeling I am now getting more often.

I continue on my vegetarian diet - 3 weeks! Really missing Chocolate!! But I have not had a head ache in 3 weeks! That is success in my book..  The body aches and pains of the joints continue but I really think I am having longer periods of time without significant amounts of pain - Good Sign!  My one big concern is my throat issues, I was really hoping that removing dairy and wheat/gluten was going to help this more, perhaps more time is needed.

Today I am thankful for "Being Positive" someday there will be a medication that will help..

Thanks for reading.

God Bless Us All

Nancy

Take a Deep Breath - BLOW - PFT Test

Friday was the big Pulmonary Function Test @ Allenmore Hospital - Tacoma

I think all went well - results are pending visit to Pulmonologist in 2 weeks, fingers crossed. 

I had a great Tech (Chris) to help me through this one. The picture above is exactly the type of machine I used - First test used a round cylinder tube, closed lips around and a nose clip placed. The machine did not like my first attempt - You really have to put effort into your breathing which I thought I had done. You have to inhale as fast as you can and exhale the same way and continue to exhale until you feel like you  are going to pass out - seeing stars for sure..  They change the tube to a mouth piece like you have on a snorkle, a tighter nose clip placed, the same breathing test is done as above. The next test they have you breathe normally but warn you they will be starting resistance on the machine - what this means, the air is not flowing freely through the tube, you can get the air by breathing forcefully to get it -  it seems like forever that you have to do this, but it is only 3 minutes. The next test you are given 4 puffs from a Albuterol inhaler, sit for 5 minutes so that it can start working,  then repeat above tests.  The total test time approx 45 minutes.

After the PFT - I had a yummy lunch and a day of shopping with Nicole. It was a great day. I love that daughter of mine.  

When I started this diet of mine, I thought I was really going to have a hard time finding things to eat - I was pleasantly surprised this weekend when both my son in law Brian and Derrick & Haley brought me bags of goodies from the gluten free bakeries in Kent and West Seattle - YUMMMM! Rick has been enjoying them too..  I have the best kids ever! I don't think I am going to be losing any weight on this diet...

I learned this weekend, I have to limit activities, all day shopping - yes shopping is exhausting, and weeding the back yard causes me to Crash and Burn! A day of rest is needed...

What I am thankful for today -  gluten free bakeries and my kids who love their Mama.. Love you guys.

One of my RP friends told me that there will be days where the pain can ease and will just become background noise . Today I am thankful for only the background noise...

I continue on my vegetarian diet with occasional fish - almost 2 weeks!

Thanks for Reading. 

God Bless us all. 

Nancy

1-10 =2 

Life Sentence vs Diagnosis

The reason I call it a "Life Sentence" - Think about it, we sit in a room waiting for the Doctor to tell us if we have a clean bill of health, or  the unfortunate diagnosis - It is not much different then a person waiting in a court room for the judge/jury to find them innocent or guilty and their sentence. In my case I was given the unfortunate "Life Sentence" of  RP - just trying to find a little humor in the whole thing.

Today I found out you never know until you talk to friends and family about this disease, and its symptoms, that they also have been silently going through the same pain. Because there may be other silent unsuspecting people I have decided I should list why and how they came up with my diagnosis.

I was originally diagnosed with Lupus, 2 lab tests came back positive which are indicators for Lupus. Because I did not have the signature Lupus butterfly rash, my Rheumatologist did not want to label me "Lupus" until further testing.  None of the other Dr's had done complete blood work ups - one would do some, then the next Dr. added a few more, finally when I saw Dr. Karr, she did the complete workup - When I went into the lab to have my blood drawn, the lab tech did not even know half of the tests she was ordering, she had to call the hospital to make sure she used the correct vials.
The symptoms that I have are - Burning sensation of the ear cartilage, a cough that never seems to go away, difficulty swallowing food or just saliva some times when it feels so thick you have to spit - gross I know but truth, Thickness feeling of the throat(occasional) Body that aches like I have the flu pretty much all day every day. burning Pain in joints that can move from one area to the next in a matter of hours (this is why it is called relapsing) oh and the dizziness that comes and goes since my vertigo episode.  I had told all of the other Dr's about the burning  of my ear - NONE of them even thought to test me for RP - When I told Dr. Karr, she said I am going to test you for something, it is pretty rare but you are showing some symptoms of it. I now know it is so important to be persistent and get the right diagnosis.
Why Dr. Karr thought to test for RP - because of my cough and throat issues and the burning sensation of my ear - this disease attacks the cartilage of the body - Ear, throat - Such a smart Doctor!

Tomorrow I have Pulmonary Function testing @ Allenmore Hospital - Tacoma - Nicole will be taking me - not looking forward to the testing, but happy she will be with me, hoping to do a little shopping afterwards.

Today I am thankful for my blog - this is great therapy!

I am now 1 week vegetarian, dairy free, gluten free, I do think the daily body flu ache symptom  has improved, my cough comes and goes.

Meals today
Breakfast: Oatmeal W/blueberries - Coffee creamer

Lunch: left over black bean chili - sweet potato chips - cranberry juice

Dinner: Portabella stroganoff over rice, corn - orange juice

Desert - dehydrated strawberries

Off to bed I go

Thanks for reading!

God Bless us all!

Nancy



1-10=3to4 Hands!

Oprah goes Vegan!!

Oh how excited I was, turned the channel on today to see Oprah and her staff had gone Vegan for the week! I had been doubting "The Diet" the last couple days, wondering if it was senseless for me to even do this diet. After today I know I am doing the right thing.  Kathy Freston who was the Veganist on the show today said that after 2-3 weeks on this diet people have improved cholesterol, blood pressure and weightloss. I am even more determined this is the right thing for me,  since Rick has joined me on my adventure this will benefit him as well..       

People really need to look at what they eat, We live in a world of processed foods - how many people do we know that have health problems, could it all be from what we are eating? Could we all have better health just by making the choice of changing our diets? I think back to what the woman from the RP site said to me "don't you think we all would be on this diet if it worked"  One will never know unless you try. I am willing to try..

Today I am thankful for my hubbies yummy cooking  -  I have made  many women jealous when I tell them about my hubbie cooking dinner  for me -  We are a good team, he cooks I clean! Love you..

Today I had a better breakfast - yummy old fashioned oatmeal with blueberries and my (1) coffee with as small amount of creamer as I can do.

Lunch left over black bean tacos (2), cranberry juice

Yummy -Black bean chili made by my hubbie....

Gluten free chips

Orange juice

apple - peanut butter

Thanks for reading.

God Bless Us All

Nancy

Health note today - I have noticed when around cleaners and perfumes  cough more.

1-10-= 5 hands, ankles, shoulders, kidneys

Echo, Echo, Echo...............

Today was a big day - Echocardiogram  @ 9:00 a.m.  Cardiovascular Consultants - Federal Way -Echocardiogram or Echo -  is a ultrasound that looks at the function of your heart, valves, blood flow, etc. You undress from the waist up, put a gown on and the Tech takes it from there.  They place sticky patches that they attach wires to, 2 upper chest, 2 lower.  They put that lovely gooey jell on the doppler and take images of all the important stuff.
One of the views they will ask you to take a breath,  hold it,  release and breath normal - That's it - 20 minutes and done..        
By noon thanks to my caring sister Kathie, who knew I would be stressing until I had my results, called with a preliminary result "Everything is looking good" So what that means is -  the RP has not progressed to the valves of my heart. This will now be my baseline that they will compare my yearly Echocardiogram to.  Another yearly exam??!!?? - This one I don't think I will postpone quite as much as the mammogram...

I just received several responses from a blog that I posted to a few days ago. This response unlike yesterdays was very positive - I have never met John Miller - but he is my new best friend... He has had this disease since 2007 - has had some serious bouts and totally gets it when I told him, the pain I have is like when you have the flu, your body aches all over - but never goes away -  He knows what I am talking about!!! He has a good, positive attitude - I so love a good attitude! He has told me several medications that worked and did not work for him so I have some research to do.
John Millers Medication - Methotrexate  first med, Dapsone - terrible, Cellcept no big deal.

I also asked him about "The Diet" he said he had asked his Doctors about it and they said it is untrue, it will not help, but it is important to have a healthy diet. I must ask, if this diet has not been clinically tested - how do they know it is untrue? I will continue with "The Diet" It can't hurt me any more then this disease is, so why not try?

John also told me when people are given a diagnosis like this it brings family's together  and your "true friends" will be there  - I do have amazing family and friends - I thank God for all of you everyday. Today that is what I am going to list as my thing I am thankful for - Family  & Friends - Thank you for your thoughtful caring words and support, I love you all - And Thank you John Miller!

My lovely Mother suggested I note what I eat each day in case my symptoms should increase it would be easier to track - today was not a good breakfast day so do not judge please.

Breakfast - Cup of coffee with creamer -which I am trying to wean myself off of and about 15 - 20 mini gluten free pretzels.

Lunch - Steamed cauliflower, carrots and cranberries and a couple gluten free pretzels.  cranberry juice

Dinner - YUMMY black bean, Avocado, tacos (3) of course gluten free taco shells - have to watch those labels, it is amazing how many things have wheat/gluten in them....

snack - 1/2 of a gluten free lemon cookie.

Thanks for Reading.

God Bless Us All.

Nancy