Sick and tired of being sick and tired

People living with autoimmune disease have to fight every day just to get out of bed. I know I've said this before but do try to imagine having the most intense workout of your life then waking up the next day. On top of your soreness and pain you have the flu so your weak, groggy; you have a headache and nausea. Then imagine you still have to do you all your regular day activities: get dressed, go to work,  get the kids to school, make breakfast etc. now imagine your flu and soreness and pain last for months or years.  You never get one day of relief. You have very little energy -wanting to use than a you do have to give to your loved ones.  However running yourself around to multiple doctors appointments takes a lot of energy away. So now your left with  guilt over not being able to go play with your daughter because you're extremely fatigued after a doctors appointment. Or you have to ask your husband to do the mom duties on top of doing the husband duties and then you have to guilt  for that. But ur body has given out- it's just not capable. It's runned down, it's sick, it tired, it's attacking itself, it's disabled. 

It's a full time job trying to stay operating. By operating I mean - having my body have the ability to move. RA causes joints to lock and stiffen to the point where they're not usable anymore. This is what's taken place in my right arm elbow. When a joint or tendion has had Inflamation for a prolonged period of time; The body does it's best attempt to repair itself. In doing so it grows a bone where there is normally tissue. As a result you get bone fusion and you're unable to move that as you were before. There is a blend of essential oils that says this can be reversed and it can dissolve the bone. I am going to give that a try and keep you guys posted.

I want to be around in the future and I don't just want to be there in a wheel chair I want to partake in life.  I want to be able to take my daughter prom dress shopping, want to plan her wedding with her,  I want to be a grandma who can help with my grand kids one day. I don't want to be taken care or assisted. 

Lupus and food

I've talked a lot about my RA on these blogs but I'm also diagnosed with systemic lupus. But unlike RA which attacks my connective tissue, muscles, bones, joints and tendons, Lupus attacks my organs. This means it attacks things in my body that are there to keep me healthy such as my kidney, my liver, brain, heart and more. 

It's super scary living with these illness and watching your health decline more and more. It's scary because I cannot live without meds but taking them makes my organs work harder and they're already in a state of weakness. They become overloaded with more toxins as I put them in my body. 

I try to compensate with my diet and supplements but this throws some  obstacles in my path. 

Obstacle #1

Having the energy to meal plan

Obstacle #2

Having energy/strength to run errands and grocery shop ( I haven't gone to the grocery store in over a year without using the driveable carts, unfortunately they don't have them at all stores or farmers markets so I run out of fuel fast)

Obstacle #3 

Prepping food ( impossible to do on my own as I have very lil function with my right side I cannot cut or chop much besides a banana or avocado) and everything needs to be fresh so it needs washing, peeling, cutting etc. this is before it's even ready to be prepared into a meal.

Obstacle #4

Finances - I need food to serve as medicine and not  poison to my body. Therefore the foods I eat can't have any preservatives, added growth hormones, antibotics, chemicals, etc. ( basically I can't get much at the local grocery store)

I need to eat primarily organic and free range/ grass fed meats and eggs. This requires getting food from several different places ( more errands 😣) and organic is costly💸. My grocery bills has almost quadrupled since changing my diet. This is just paying for food- this isn't mentioning the endless amount of other cost that have developed/ increased as a result of my condition. 

Most of these obstacles were overcome this week (minus the last) by ordering my food from fit foods. If you decide to use them PLEASE tell them I referred you and let me know because I believe it qualifies me for a discount. ( they are out of redlands) Anyway, it was $160 for lunch and dinner for 5 days prepped and ready to eat! This was a huge weight off my shoulders knowing I could eat healthy without trying to stragegize on how to get it prepped and made. But $640 a month that doesn't include bfast/ weekends or food for my hubby and daughter is a lil much for me to be able to do consistently. 

 

I hoping there's a way to continue because it honestly is my biggest challenge and has the biggest affect on my health and well being. If anyone is interested in it, it will lower my cost and If u refer someone it will lower your cost as well! :) Also there are some meal plans less than $160 per week. Fit foods redlands. Let me know! 😊

Holliejean5@msn.com

Thanks for reading 

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This last pic is just to hoping I can fit my wedding ring on again soon! Because of inflammation it usually doesn't fit.

New diagnosis

I will start with Saturday. Saturday my husband came home from his fantasy football draft with a little brown bag in his hand. Before I even opened it I began crying. When he was at the draft one of his friends gave it to him to give to me from his wife. She's been reading my blog and sent me a care package. I was so touched, it brought me to tears, It's so nice to feel cared for and know others are thinking and praying for you! Thank you Coral! :)

August 20th I had my rheumatologist appointment. I told her that I have been taking my methotrexate medication for about 2 months and haven't noticed any difference. I've also still been on plaquenil and prescribed prednisone of which I weened myself off because it makes me psycho. She looked over my most recent blood work and asked if I have bleeding from some where or if I have heavy periods ( um..no and..no) because I am still dropping in blood and have been chronically anemic for over a year and a half; But it continues to get worse. My hemoglobin is 8.4. She referred me to the blood specialist again and ordered a whole work-up of blood work for iron. I showed her my elbow and how the bone has now fused together with permanent damage and asked if I will ever be able to straighten my arm again. She said we can try a cortisone shot but I said let me think about it and get back to her. ( I've had cortisone and predisone injections plenty of times before. Sometimes I wish I hadn't done so much research and not know all the bad that comes with drugs/med.)

I've been juicing all week and have had NO SUGAR. I ate mainly chicken and veggies and these endurance bars I made with a friend. I still woke up everyday like it was the new worst day of my life.

On Tuesday August, 26th, I had an appointment with new primary care physician. I was very pleased with him and enjoyed his presence. He did a small physical and looked over my blood work- he said I needed to see the hemotologist right away for the anemia and also I'm deficient in b12. ( btw...I take this supplement everyday along with iron.) From his examination he said I don't have candida- which was enough to make me run home and eat a banana and throw away the last 9 days of absolutely no sugar. :(

They started now allowing patience to view an echart. Here's what's on it from those 2 visits:

Problems

Problems

Name	Type	Code	Status	Effective Date
CERVICAL LYMPHADENOPATHY	Diagnosis	127086001 (SNOMED CT)	Active	08/26/2014
CHRONIC FATIGUE SYNDROME	Diagnosis	52702003 (SNOMED CT)	Active	08/26/2014
DYSPEPSIA	Diagnosis	162031009 (SNOMED CT)	Active	08/26/2014
ELBOW PAIN, RIGHT	Diagnosis	74323005 (SNOMED CT)	Active	08/26/2014
RAYNAUD'S SYNDROME	Diagnosis	195295006 (SNOMED CT)	Active	08/26/2014
SCREENING FOR HYPERTENSION	Diagnosis	171222001 (SNOMED CT)	Active	08/26/2014
SYSTEMIC LUPUS ERYTHEMATOSUS	Diagnosis	55464009 (SNOMED CT)	Active	08/26/2014
VITAMIN B12 DEFICIENCY	Diagnosis	190634004 (SNOMED CT)	Active	08/26/2014
ANEMIA OF CHRONIC DISEASE	Diagnosis	234347009 (SNOMED CT)	Active	08/20/2013
HEALTH SCREENING	Diagnosis	79206001 (SNOMED CT)	Active	08/20/2013
LYMPHADENOPATHY, AXILLA	Diagnosis	127189005 (SNOMED CT)	Active	08/20/2013

You may notice some new diagnosis. :( When I was there my nails were a little blue and I guess I showed other signs of that Raynaud's syndrome and dyspepsia. I'm not sure if these are official diagnosis because they sent me off for more labs and a stool test. I feel like I cannot catch a break. I feel like everytime I am at the doctor's its more bad news. Yet, I have to go because I need to be monitored with my conditions and medications.

You might ask why I am on the medications now. Well it got to a point where I had to, I need some relief and without it I feel like a complete burden to my family. I feel like the part in that movie LUCY where she is sitting in the chair and watching everything happen. I feel like life is happening and take place all around me and I am just present- in the chair. Watching everyone else live.

So enough with Debbie Downer. Here's the good news: that banana put me in a wonderful mood! I have had a very happy week since then and have enjoyed my family and have even noticed the medication to start kicking in! Whoo hoo! I've enjoyed getting into reading the book Coral gave me that has provided some great insight- it's called one thousand gifts. I chatted with a guy from church who suffers from RA and it helped to talk to someone who can relate to many of my thoughts and feelings. He made me realize healthy individuals are never going to get it. So I need to stop trying to make people understand, its not something anyone can comprehend unless they've been there. So I need to try less on getting others to understand and more sticking to the facts and how life has changed from when I was healthy. I'll save more of that for my future blogs! Finally, Chela made me some yummy homemade beans and salsa, which made my day and are so yummy! Also, I was able to throw my daughter a small birthday get together with her friends. I had a breakdown a few times because I wanted it to be special for her and I couldn't do everything I wanted ( bc of low energy and capabilities) but I am happy for my husband AGAIN and that with his help we pulled it off! Things I am looking forward to this week:  seeing my friend Liza and having her do my hair, detox suana, small group, Makenna's birthday and soccer game! Have a blessed week! :)


BTW... I said I walk the fence because I do between holistic medicine and modern medicine.  ahhh!