HOW ARE YOU?

JanetGrant
  • By JanetGrant
  • Posted September 2, 2008 at 11:54 pm · 99 replies
  • Edited September 3, 2008 at 2:09 am
9 Recommendations

I haven't written a journal in quite a while and I think of and pray for all of you. If you are on my friend's list, I know a little more about how you're feeling than the rest. I read the posts on a daily basis, and I read most all of them. There is still a lot more we could share with each other, to help one another.

I wonder about everyone and how you are coping with disease physically and mentally. It's a rough road we're travelling together and I'd like to ask you to let the rest of us know how you're feeling by answering my journal. We all care about each other and this could be a way to further assist each other. I know there are too many of us out there with no support system.

No matter what problems you are currently facing or battles you are fighting, let us know by answering my journal. If you need help or advice, we have some brilliant people here that will, I'm sure, be glad to assist you in any way they can.

Please write back to me. You are my journal. Fondly... JanetG

99 replies

Cheesypops

JanetG as always its always enlightening to see what you have read. Makes me realize that this site attracts many many more of the good types of people.

Like you I tend to find myself reading here on a daily basis. Checking on the stuff that others are going through, seeing if any of my travels can assist. And always finding great enjoyment in The Gardner and Paradox's post's. Although they both have been kinda quiet of late, and Hope they are both well.

First day of school for my kids today so routine is starting and this is good. I am well and hope your doing the same if not much better :)

G

JanetGrant

Cheesypops,

Thank you for your kind note and that always important recommendation. I hope that we can get a lot of responses to this journal, as I know we have plenty of members who are in need of help either with questions about a health issue or just a place to vent.

I know Paradox was on a wean and most likely needs to rest. Did you know that he works 16 hour days and still offers his knowledge and right on advice to all of us?

The Gardener has hung up his "Gone Fishing" sign, so I assume he's taking a much deserved break. You've got to love both of these guys for all they do for all of us.

You're on my honor role also, as I see you jump in there and help others by sharing what you've learned, I'm guessing from extensive reading and suffering with this naaasty disease yourself. You then sprinkle what you've written with your Gardener - type wit & humor! Perfect. I hope you're telling me the whole truth when you say you are well.

I'll be honest. I still have those dreadful rib, lung, and spine pain issues. Doctors say it's a result of thoracotomy (lung surgery) from 2004.

I had an MRI of thoracic & lumbar spine. Thoracic is fine. Lumbar pain is osteoarthritis. One problem, which could be nothing, is that they could see a lesion on cervical. So I'm off again for an MRI of cervical spine. Just waiting for doctor's office to schedule it. Not worried at all, yet.

So come one, come all, and let's dump our troubles and questions here. We can all learn a little something from each other. Hugs to Cheesypops and the rest of you. Waiting to hear from you... JanetG

smilinginside

Hi Janet, I just wanted to say thank you for you kind words and prayers. This disease is a rough one, like I said in one of my post its like playing Marco Polo with your body, where will more of these things pop up tomorrow and the lack of sleep from prednisone if horrible........ But it’s nice to have this site on sleepless nights to vent, or just trying to help someone else really makes a big difference. I know it doesn't take the pains and aggravation away, but it certainly takes your mind off your own problems even if for just a little while. Members like you really make a big difference in all of our lives and I want to thank you again from the bottom of my heart. My prayers and thoughts are with you and your family. Hope you feel good! And there will be better days ahead for all of us. Be well! Eileen

Cora42

Dear Janet,

So glad to see you post again and it is a good idea to get people talking. I find more information out from these posts than I do at the doctor's office. It helps to know that others suffer the same symptoms because it lets me know that I am not crazy when the doctor tells me it's probably something else or ignores the problem altogether.
As of right now I feel pretty good and have come to believe the doctors are wrong about some of my diagnosis. Although my lungs are in extremely poor condition I can see from these posts that I am fairly lucky not to have some of the more serious problems that I see others blog about. For now life is pretty good, I'm still standing, walking and enjoying what is left of my summer. Best to all of you.
Cora

failin17

I have this disease for more than 16 years. Two years ago I found it had spread and now I have all these problems with walking (it hurts) and sleeping (pain in my legs). Now I suddenly have other internal endometrial problems. I am only 42 years old and I feel a lot older than that. I have to go back to my pulmonologist next week for an odd pain in the chest and more difficulty breathing? So is the only solution or medicine for this preds? Is there anything else?

may_may_1968

Hi JanetG,
Today is not a good day I just want to breath with no pain. My son leaves Sunday for the Marines and right now I'm having a pneumonia flare up ( 5th one this year) dr wants me in the big house but I will after my son leaves. It feels good to know that someone understands what I'm going through and don't mind sharing, venting, and caring about what we are going through. My prayers go out to everyone and be bless. May

gonenatural

Hi Janet,

I don't know if you have read what I have written.

I am 44, been sick for since I was 8-9 yrs old and have not been dx'd yet with Sarcoid by the proper dr. 3-4 specialists state I do have it but they are not qualfied to "label" me.

In the past month I have become sicker. Summer has helped me even though I do stay inside in the ac often. I dread winter more each day, the cold damp weather is just the worst.

As you see in the photo I do have a friend. She was to be my helper but she is too sick now herself. She has a much smaller brother she tries to play with. I have an older friend that tries to help me even though he does not understand and just disgusted with doctors and hospitals and not having a close answer.

H***l's Kitchen is on, must go,
Gone Natural

Star51145

Janet,
What I love most about this site is the people like you who are on it. You are so sincere about everything you write and that is very comforting. I know I'm pretty young compared to alot of people on here and I worry sometimes that I won't be taken seriously..but its the friends like you on this site that make me feel comfortable enough to write and answer posts when I need to. So just wanted to say thank you- it means the world to me. Honestly.
Things with me haven't been going so well I hate to say. On top of the neurosarc and the symptoms I've been going through they found two large plum sized cysts on my ovaries. Luckily for me they ended up rupturing so I didn't need the surgery they were planning, but it made me very sick and just feel crappy all over. The inflammation in my neck where the lesion is seems to be getting worse I think.. I am having a hard time moving my head up and down when I'm at work using the computer. The numbness and shocks have increased also. Its not fun but getting by day by day. I'm sorry we all have to have these awful days and I just pray someday it will all go away-- I know, wishful thinking.

xoxo to everyone,
Kerrie

Michele5

Janet,

You are so kind to write this journal. It does help to talk and I'm grateful you gave this invitation.

I'm feeling good right now and have been for about a week and a half. I'm counting my blessings. Hoping that I'm doing something right and will figure out what it is soon so it will continue. I know from experience that feeling good is a gift. I'm sure we all know that here.

I wish you the best of luck with your latest issue of the cervical lesion. Man, that sounds lame, but what can I say. I just want you to be well.

Michele

singernomore

glad to hear from you again! i always look forward to your posts. i am status quo, trying to wean from some meds. more facial numbness now - that always comes and goes. more nausea - goes w/ the attempt to wean. at least the lungs are stable. just started some tingling in one foot - i'm guessing it's related, will wait to see what happens. just lost a very, very dear friend tonight, so a bit of shock - checking out e-mail to divert myself.

best wishes to all - i do read all the time even if i don't add comments.

JanetGrant

Dear failin17,

I am truly sorry that you are suffering in this way. I'm certainly not qualified to tell you not to take prednisone. Yes, there are other medications, a few with less side effects, most with worse side effects.

I will not take prednisone, unless my life is in danger and even then, the doctors may want me to be on methotrexate or some other medication. I must stress here that this is a decision you must make with your doctor. You can also get a second opinion from another qualified physician.

I had my day on the operating table, with the threat of lymphoma or lung cancer hanging over my head. My upper chest, lymph nodes, and lungs all contain sarcoidosis. No lymphoma, no cancer.

I've had doctors since then tell me that sarcoidosis was probably the cause of my Meniere's Disease, years of joint pain, and severe carpal tunnel syndrome.

I am currently on vicodinES & 800mg of ibuprofen for chest wall, spinal, and joint pain. I am also on 20mg of Lexapro which is an antidepressant & 1-3 mg of xanax for anxiety and panic attacks. I suffer from severe depressive disorder and it is a plague just as damaging to the heart and soul as the sarcoidosis. In some ways it is worse.

This is a wonderful support group we have here. You can put out as little or as much information about yourself as you wish. Yet, when I look at your profile, there is very little I can learn about you, except what you wrote in your letter.

I feel you may be suffering from depression and I say this only because I see fear, sorrow, and a sense of hopelessness in your letter. I know how painful it can be because I suffered from it for years.

We would all love to know your first name or any name you choose, but please don't be "failin" anymore.

If you are depressed, you are unable to fight your way back from any disease. If you think you are depressed, ask your pulmonologist or his nurses or someone on his staff for a referral to a psychiatrist. Remember... only a psychiatrist can write prescriptions. Psychologists cannot and therapists cannot.

If you have a good Primary Care Physician (PCP) or a good Internist, they can help you with a medication for your depression or expedite an appointment with a good psychiatrist. Your pulmonologist or gynecologist can also. I say this only because it can take months to get in to see a good psychiatrist. I prefer seeing a woman doc, but that is a personal decision, especially when you are telling a stranger your life secrets.

Just the fact that you wrote your letter tells me that you want your life back and indicates that you are ready to fight your way out of this nasty disease. Get the medical help you need and depression is a medical problem just as sarcoid is. We are here for you. We are praying for you that you will be the winner. Stay in touch. Be Well... JanetG

JanetGrant

Dear Eileen,

Thank you for your lovely letter. I hope I can live up to all those nice things you said about me. I just felt it was time we all got together and talked about what ails us, kind of like a Town Hall meeting on sarcoid.

Why don't you ask your doctor for a sleep aid if you're having insomnia from the prednisone? Everyone knows it can cause sleep disturbances. Or is your doc one of those who wields all power with his prescription pad? Ya gotta love it.

Stay in touch and keep me up to date on your health and all the other stuff, too.

If you're still up and need A good laugh, check out the Gardener's latest photo. I broke 3 more ribs laughing.


Be Well. Hugs... Janet

JanetGrant

Dear Cora,

As always you set the example for all of us with your upbeat, it could always be worse, positive attitude.

I just want you to promise that if you ever need support of any type that you will give us all, a holler.

Also, did you ever find a doctor that you feel is competent and that you are comfortable with? Please let me know.

God bless and Be Well... Janet xxoo

JanetGrant

Dear May,

I don't want to get up on my soap box here, but pneumonia is not a disease to fool with. There are many different strains of the bacteria that cause it. If your doctor wants you in the hospital now, Sunday is too far away. It can worsen quickly over a day or even hours.

If your doctor doesn't feel it's necessary for you to be admitted immediately, then I'd say it's okay to wait. If you are going against his wishes, it is a dangerous thing to do.

I'm sure your son would spend the time with you in the hospital before he leaves. Putting yourself at grave risk is not fair to him or the rest of your family. Do whatever it is your doctor suggests. Your family needs you.

God Bless and Be Well... JanetG

JanetGrant

Dear gonenatural,

Yes, I have read most of what you've written, and understand you were diagnosed with erythema nordosum. I do understand that this can be an indicator or symptom of sarcoidosis, but it is also a symtom of other immune system disorders.

You need a biopsy of some part of your body, usually the lungs,or lymph nodes to confirm a diagnosis of sarcoidosis.

It is also a good idea to seek mental health care preferably from a psychiatrist, as the disease can cause depression and confusion. I know it did for me.

I wish you the best in receiving the correct diagnosis and good health.

Be Well and God Bless... JanetG

Cora42

Dear Janet,

I finally think I may have found a great doctor! I have only had one visit but so far am very impressed. He actually took the time and listened to me. He even really read my chart and looked things up he wasn't sure of. That's a good start. He also took me off all meds for now as they weren't really doing me any good and I feel so much better. Still on oxygen but have learned to go w/o in the house if I pace myself.
I have decided against the lung transplant because I am not comfortable with what will happen and don't have a good feeling about it right now. Maybe in the future, we'll wait and see.
I hope you are enjoying all these posts as you bring so much comfort to people who need a kind word. Have a wonderful fall.

Cora

gonenatural

Hi Janet,

I read about you and you state you want a life away from Sarcoisosis but was just dx'd with Fibromyalgia.
How did they differ Sac from Fibro? Do you know? Does the dr know for sure?

I ask because I have been running from Fibro for yrs and it is not something you can run from but occ have a really super day or do something foolish and pay for it later but usually it was worth it.

As I stated in my last letter I have not been dx'd by the "proper" dr yet and it seems like my new pulmonary is a real winner, gag, and he is suppose to be a Sarc Specialist.

I am going through the last of the paper work to make copies to send off to him now and I am reading from 2006:
can't stand up with eyes closed
has great difficultly with tandem walk
loss 10% of feeling on right side
can feel colder objects on right side
my gait is wabbly
balance is poor
positive Hoffmann's and Tromner's on both sides, hm

All of the above is blamed on migraines, this is 2006.

That is only some of the occ symptoms I get. I have so, so many more like the rest of us. Did you know the with Fibro there are certain foods to stay away from?

Well, take care Janet and have a great wkend,
Gone Natural

JanetGrant

Dear Kerrie,

Thank you for your kind words. Belonging to this group of wonderful people has gotten me through many sleepless nights.

Now, more about you. Have you been diagnosed yet? You mention neurosarc. Is that your official diagnosis?

What type of doctors are you seeing and what type of treatment are you receiving for your illness?

I am happy for you that you did not need to have the surgery, but that ordeal must have been extremely painful.

I did read your profile and your letter is more up to date than your profile. I think that is true for most of us.

There is no age limit on this website, just a combined effort to help each other by sharing information, (good and bad) in order that we, as patients can steer clear of the nonsensical false "quick" cures, and aid each other with good medical information or sometimes just to provide a shoulder to cry on for our members and their family and friends.

Never worry that you are "too young to be taken seriously." Unfortunately there are far too many young people who have been stricken with this disease. The good news is that if you are diagnosed with sarcoidosis between the ages of 20 to 40, you have a far better chance of going into a permanent remission of the disease than those of us who were diagnosed over 40, or so they think.

You write very well, and are a lovely young woman. Please write back and let the rest of us know the answers to some of my questions, that is, only if you'd care to share more info about your health. We do care.

xoxo to you, also. Be Well... JanetG

darlan

Dear Janet,
Thank you for your care and support. I am on my 5th week of methotrexate and still waiting for the pain in my joints to get better. Ankles and feet are the worse but also have pain in my thumbs and wrists, other joints at times. I was just diagnosed with sarcoidosis in Dec., 2007 after a mediastinoscopy. I was diagnosed with fibromyaglia in 2004 after several weeks of severe joint and muscle pain. Rheumatologist at that time also thought I might have lupus but on the 2nd visit said it was just fibromyalgia. Last fall I started with sob walking up inclines and stairs and joint pain. Chest x-ray started the ball rolling to the diagnosis of sarcoidosis. Since March I have had more joint pain to the point of difficulty walking. This is very upsetting to me because before that I tried to walk in all the 5K walks I could in our surrounding communities. Now I can barely walk 10 minutes because of the pain. Rheumatologist said I may be able to start water therapy when I go back Oct. 1 if the inflammation is down. The joint pain, inability to do normal household chores, fatigue, weight gain, and problems sleeping are all so frustrating. I try to keep a positve attitude and just take one day at a time!! Lucky for me, my husband is so caring and understanding. I also take Lexapro and have been on antidepressants for many years. If not I'm sure my attitude would be much worse!! Thanks again for caring!! We are all in the same boat with this disease!! It helps to just be able to vent when needed!! Have a great weekend!!
Darla

Star51145

Janet,
At this point the Neurosarc diagnosis is not 'official'. I was first diagnosed with MS, then Transverse Myelitis but after many months of tests those turned out to be wrong. I had fallen down the stairs Feb 2007 and broke a rib, shortly after I started having awful pain in my hips and lower back and odd sensations that would run down my arms into my fingers anytime I would look down or move my head a certain way. I thought I must have pulled a muscle or that my back was out of whack. I started seeing my doctor who also does some chiropractic work - he put me on muscle relaxors and tried to work on my back. At that point I was feeling much worse and I started having trouble sitting for long periods of time or driving. My knees would go numb and get pins and needles in my toes. He sent me for an MRI which showed a lesion on my cervical spine in Oct 07. Right away I was sent to a Neurosurgeon who insisted it was tumor, but the Neurologist he had me see decided it wasn't, he thought it was MS or the Myelitis. Well after hundreds of blood tests, MRI, CT's, two Spinal Taps, and plenty of other testing it showed it wasn't a Demyelinating disease (spelling?) So my new neurologist has been throwing the sarcoid diagnosis around. The only way I will know for sure is if we do a spinal biopsy but he thinks it is best at this point not to do the biopsy unless it gets worse, because of the risk involved.
Since October my treatment has basically been the same. I started out getting Steroid Infusions every couple of months to and try get rid of the inflammation. After two or three of those with no change we stopped because they were making me sick in other ways. I am now on Neurontin to try and control the shocking sensations, Ultram to keep the pain minimal, and when needed percocet if the ultram isn't working that day. I was also prescribed Zofran because most days I am pretty sick to my stomach.
I wasn't quite sure I believed that sarcoid could be what I have until I read a post from 'notyalcer' and he literally wrote my exact story and he does have an official diagnosis.
I'm sorry for writing a complete book but I didn't want to leave anything out. I feel so lucky to have found this group of people to come to when I am having a not so good day. Its almost as if when I feel like I am at the end of my rope I come here and either someone is able to make me feel better with kind words and advice, or you read something and realize that someone has it alot worse that I do and could maybe use my help that day. I am so thankful for everyone out there who is able to offer any words of comfort, takes time to answer questions or is just there for moral support or to make us laugh, and I hope that I am able to do the same for others.
Again sorry that this is so long, but thank you all for everything.

xoxo
Kerrie

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