Update from almost a year ago

By RoseAngel Latest Reply 2010-10-30 13:09:45 -0500
Started 2010-10-27 08:31:17 -0500

Hi Everyone,

It's been quite a while since I was on this site and the last time I posted, I was so frustrated, I was seriously thinking of ending it all.

I've been extremely ill for the past year, which is a lot of the reason I haven't been on this site. I had stated at the time that my podiatrist felt that something was going on in my body that was underlying all the different diseases that were manifesting. Well, it turns out that I have sarcoidosis.

Sarcoidosis is a disease that, even though I worked in the medical field until I became disabled, I really had not even heard anything about. It's an autoimmune, inflammatory disease that can affect any organ in your body. I pointed out a "rash" I had on my legs to my podiatrist and he recommended that I see a dermatologist, which I did. He performed a biopsy, which revealed the sarcoidosis. He said I needed to be checked out to make sure it wasn't systemic. Well, it took me almost a year to get anyone to really pay attention to me. I transferred my primary care to a different doctor, who really seems to care a lot more than the old one did. I had been coughing and was short of breath for about 10 months and kept saying that they needed to do a bronchoscopy to see if the sarcoidosis was in my lungs. I finally started coughing up blood and was running fevers and my oxygen saturations fell to the low 70's. I wound up in the hospital and a doctor finally did the bronchoscopy with a biopsy. Sure enough, the sarcoidosis was in my lungs. Since then, I've discovered that it's been in my spleen and liver for the last five years and was in my gallbladder, which I had removed five years ago. No one thought to tell me about the pathology report that basically stated that there was a sarcoid process going on. My spleen had so many nodules in it that a report said that metastatic disease should be considered. Nobody followed up on it - if it had been cancer, I would be dead by now. I'm seeing a doctor up in Denver at the National Jewish Medical Center (NJMC). They're the leading medical center for treating lung disease and sarcoidosis in the country. The doctor wants to have my heart checked out because I've already had a cardiac arrest and she wants to be sure that I don't have it in my heart. She also wants me to have a neurology consult because of all the neuropathy and radiculopathy I have and it attacks the neurological system also. It can also invade the brain, but no one seems too concerned about that at this time, although I'm having some of the worst headaches I've ever had in my life.

My blood sugars are under a little better control. I'm really trying to watch what I eat. I've decreased the amount of insulin I'm taking by about 50%, but I'm still on so much that my doctor says that even if I didn't eat at all, I would still be gaining weight. I finally told him last month that I wanted gastric bypass surgery. Studies have recently shown that that's the best way to "cure" diabetes.

I still have a long way to go; the medication that I'm on for the sarcoidosis doesn't seem to be working - and it's very potent medication. One is a chemotherapy medication and the other is something that used to be used to treat malaria. They have to check my liver every month to make sure that it's not being overloaded by the medications.

I hate this time of year, especially now that my children are grown and away from me. I'll be spending this entire holiday season by myself. I have no friends where I'm at now because I've been so sick, I've basically become a shut-in, and when my health deteriorated, my friends disappeared.

I hope everyone is doing okay (yeah, right). I am asking for prayers for whatever else comes my way.


11 replies

jetten2 2010-10-30 13:09:45 -0500 Report

I am sorry you are going through all the difficulties. I can supply the answers to rid you of your health problems but you have to stay the course with much sacrifice in your eating habits. But I can attest that the program works.
For me and everyone I know who has been on Dr. Robert Young's program has had remarkable success with Diabetes, Cancer, High Blood Pressure, Heart Disease and much, much more.You can go to his website ((removed by administrator)) and get all his info. He is also on facebook where you can see hundreds of testimonialsfrom thrilled followers.
As for my personal experience my 14 day average of my blood sugar readings taken 4 times per day was always around 200 for the past twenty years. I had my good and bad readings but my average was consistently around 200. I am on an insulin pump. I have high blood pressure an was on medication for that. I am 5'7" and weighed 185 lb.
I went on Dr. Young's Alkalarian Diet (alkaline) and the results were incredible.
Within 2 weeks my 14 day average blood sugar readings went from 200 to 107 and my blood pressure dropped dramatically. I lost 30 lbs in 30 days. I am now getting more strict with his diet but the results are worth the effort and sacrifices. I chose to live a happier and healthier life over eating what I liked and eventual death. I will not lie to you the diet is the toughest one you will ever encounter. I am now a Vegan drinking alkaline water only & eating only what he recommends but I one day hope to be off the insulin which I was using about 60-110 units per day and I am now down to about10-20 units daily.
The only reason we get ANY disease is that our bodies are Acidic. Once you get your body to Strong Alkaline you will not get illnesses and you will rid yourself of the ones you have.
Dr. Young is a scientist who studies the blood and has thousands of successful results with his followers. I AM SURE IT WILL WORK FOR ANYONE AS IT HAS FOR ME!

Erunner 2010-10-27 21:43:15 -0500 Report

It's difficult to read your story and I wish I had the answer to make it all go away but I don't. I prayed for you as ultimately I believe God is in control of everything. Even during the times it seems He has left the building.

If you are struggling emotionally you might want to find someone you can pour your heart out to. Sometimes that act alone can be very cleansing. Maybe that person might be a family member, a close friend, a church Pastor/counselor, or if necessary a professional counselor.

Please don't become isolated if you can help it. There appears to be many here who are eager to help you in any way they can. That is a blessing of online communities. God bless you as you move forward.

Guardianstone 2010-10-27 18:01:01 -0500 Report

I am so sorry to read this. I didn't get all of your message before I answered. If you need to talk I'm here. Leave a message, If I can I'll get back to you. I did something stupid. I took all of todays meds early this morning. I don't know when or why. All I know is that my Wednesday pills are missing.
Maybe I am sleep-walking. I have been known to sleep-fight. I hope the Cymbalta hasn't sent me off to wonder land. I don't like that Idea.
BTT - back to topic.
Call (contact me here) if you need to talk. I'll listen.
Guardian stone FRIEND in health (ha) and Illness. Not laughing at you!

Two painful feet
Two painful feet 2010-10-27 17:12:30 -0500 Report

I'm so sorry that you are going through these medical problems. Do your children know what has been happening to you? Have you felt like calling them to tell them your lonley and would enjoy seeing them. My heart hurts for you and I would be your frirend if you want me to be. I'm home bound myself from Post polio. paralized stomach and numerious other things. So I understand somewhat of your feelings and lonelyness. Would love to talk with you.
Your Friend

Guardianstone 2010-10-27 16:37:41 -0500 Report

Hello Roseangel;
Please don't let your illnesses destroy you. You are important. I hate seeing anyone in pain. It hurts me. I am a worry wart. I have never been able to turn off being a mother hen. I check on all my chicks. Asking if they have taken their meds, if they are eating, can they afford their meds and food, are the safe, do they need to talk, how are they, and what do you need? After that mouthfull If I don't hear from them I tend to panic.
Please don't make me panic. I have enough on my plate.
PLEASE TALK TO ME. I'm here, and I care. (and pun)
'It's who I am'. I also misquote things (on purpose), and try for a smile.
Please smile for me. Its exercise.
Yes the dreaded word. I forgot the exercise, and doctor question. (OH Hoover Dam)
Not supposed to curse here, but - Peanut butter and dill pickles this is important.
I have a bit of your problem. (read about my pity party in 'Am I cursed'?) I thought the position of Job had been dropped at my feet.
With that rant I learned what strength I had.
The name I choose was quite by accident! I choose it for my best friend, and writing partner. (no dead) We would fax story notes back and forth. The last time I heard from her we had 6 stories in the works.
I miss my blood-sister so very much. God bless. I have heard her husband murdered her. She was a dear and compassionate person, her heart was as big as Texas, she was my twin of another mother.
Back to the subject.
You need help. I am offering you a person to rant to. If I must be a mother hen I might as well be able to pick who I am being a Jewish mother hen for.
No I'm not Jewish. I just nag like I am. My people have also suffered long and were (and are) hatMed by many. It's an American Indian thing. My Great grand mother on Mom's father was as well as my Great grandmother on my Mom's side were full Indian. I guess that makes me the wise old mother hen(?).
I'll refrain from judgement, as that's not my job.
Please stay alive healthy and know you have family here that care.
My bloodsugar hit 371 and I am on a rant.
I'm also in trouble because I just noticed that some time in the last 24 hours I have taken all my Wednesday meds. Cymbalta, dyphenhydramine, and low dose aspirin. I don't remember taking them. When I checked my noon meds none of them were there.
I'm dizzy and am slowing down. I imagine this is what a flashback of acid might be like. Never tried it. But I once saw a movie that delt with a man drinking a cup of coffee with the sugar stored in the refrig.
I'll keep an eye on it and have my husband watch me also.
Write soon please.
Guardian stone
mother hen calling

Graylin Bee
Graylin Bee 2010-10-27 15:13:27 -0500 Report

I am glad you have finally been able to get some answers to what is going on with your health. I know it is frustrating and frightening to have a medical condition that goes undiagnosed. Thankfully you have found a very good hospital to treat you.
Have you been able to find a similar site to DC for sarcoidosis? It has been very valuable for me in learning about the affects of diabetes. I wish there were similar sites for my other problems. Somehow just sharing common problems unique to your medical condition with someone who is going through it really helps.
Prayers for strength and comfort.
Remember you do have friends here a DC.

jayabee52 2010-10-27 16:24:15 -0500 Report

There are sister sites to DC.

At the top of most pages in DC is a black stripe and on RH side of page are the wored "Visit another community" with a triangle pointing down. Roll your cursor over those words and a list of about 20 different communities drops down.

If I remember correctly you can click which one you'd like to join click" log in" on top right of the first screen and put your DC sign in information and password into the log in screen.

Unfortunately from what I remember there was not one for sarcoidosis. Perhaps you could mention it to John Crowley and ask about setting one up.

I rarely if ever go to the others, though.

Blessings! James

Harlen 2010-10-27 11:57:17 -0500 Report

Never forget you have frends here .
I am so sorry your going thrue this I know it must be hard.

I too will be by myself this x-mas so if you like we cane chat just drop me a line anytime
You have my prayers and whatever els you wont lol

LTennion 2010-10-27 10:12:53 -0500 Report

Wow Paula, I have to admit, I do not know quite what to say, other than I am so sorry to hear that you are facing this ordeal without much support from family or friends.
But I'm glad that you found the time to return to this site. I know you will find some encouragement here among members who are sympathetic and understanding. I can't imagine the frustration you must feel with the medical community. I wonder if you can take any anger felt and use it to your benefit to win your battle. Do you have any hobbies or interests? Sometimes, it helps to take a walk (if you can) just being outdoors, listening to the sounds of nature. I find solice and comfort just paying attention to the really simple and small things in life that are constantly ocurring all around us. Like the smell of dirt and grass during my morning walks, and a butterfly fluttering around a flower.Witnessing the sunrise. Do you have any pets to care for? I realize they are added responsibility to your life, but what they give in return can well be worth it. I understand and can certainly relate to your thoughts of giving up. I think that our emotional well being is so often overlooked, or at best, only considered as an after thought. In my opinion, it is so very cridical to approach any chronic medical condition with a clear understanding of the psychological impact that chronic illness imposes on individuals. When someone suffers from depression, thier ability to make good decisions are inhibited and that's when complications tend to arise. Attitude has such a strong impact on the outcomes hoped to be gained. My hats off to you as you strive to live the best possible life and to remain optimistic and motivated. For me, I have noticed that I tend to cycle. I have good days and bad ones. I can sense when the depression is emerging again. I have learned from previous experiences that "this too shall pass". I perform the "self talk"…and I find that in a few days time, while I'm recollecting on the days before, I have to laugh at myself and what I was thinking. I know that this matter is really and truly nothing to laugh at, but if you can, you can survive. I know this sounds crazy, but try to have fun with it!

Best of Luck, and keep in touch, as you'll be in my thoughts!


RoseAngel 2010-10-27 16:54:42 -0500 Report

There is a site for support for people with sarcoidosis and I do belong to it. I've probably been on it more often lately just because that's been my major problem.

Guardianstone, please don't worry about the meds you took. I'm also on Cymbalta and most of the other meds you mentioned and I've taken the wrong ones on the wrong days - it wears off. I'm on so many meds, that it hardly makes a difference to me (lol). I will keep everyone posted after I get my heart and neurological condition checked out (I'll be here more often also). Thanks for all the support.

Guardianstone 2010-10-27 16:50:19 -0500 Report

you are so right. You discription of dirt and grass foum your morning walks is causing me to remember the smell of freshly mowed grass and the clean smell of dirt after a rain. It's been a while, but my vivid imagination flashed into full sinsation over load. It is exhillerating.
Thank you. You are blessed, and a blessing.
Guardian stone

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