I Might Have Lupus and I Feel like My World Is over Soon. I Can't Stop Crying

I am so sorry you are in the midst of a dark time.

My sister-in-law has lupus and has found a wonderful doctor to help her. She has had to make huge changes to her diet, but has stuck to it very seriously and is doing well. The initial costs are high, as I understand it, but she has been able to avoid strong medicines and organ deterioration thus far. Here are his details: Dr. Greg Saunders, NMD in Adrian, Michigan, ###-###-#### (Email me off list if you would like to contact my sister-in-law: ____@____.com)

Hi J.,

The world is NOT over! And worrying causes stress and stress will exacerbate your symptoms. God is good! He only gives His children things that will grow them in their faith! I do believe that Lupus is caused, not inherited, and it CAN be cured. Lyme disease is tricky but caught early can be cured as well. Left unattended it will only get worse. I have two friends with Lyme disease and both are on the mend. One, Jeannette, was near death but she had it 20 years before it was diagnosed properly. It's been a long road for her but she is building her immune system and is now having good days.

J., Lymes disease can be passed on in utero so you should probably have your daughter tested as well. Jeannette had 3 of her 5 children test positive. That would be an explanation for your daughter's up and down health. Be thankful that you caught it early.

Please private message me and we can swap phone numbers. I can let you know what my friends did and some other things that will help your body fight it off outside of what the medical community will tell you. God doesn't promise us good health but He desires only the best for His children.

God bless!

M.

You have a lot you are trying to deal with now and you are scared and a little overwhelmed. But you do need to pull yourself together and make some positive steps. Make the appointment to see the specialists and take a friend or someone to take notes. When someone is very upset when they visit a doctor or gets a devastating diagnosis, they don't hear all the things that are said. After you get the information, then you will be better able to make decisions. Also get your husband to go to see a certified diabetes educator so he can get his diabetes under control. Once his diabetes is controlled, you won't be as worried about him and he will be able to support you.

J.-

Sorry to hear about all the woes your family has had - I can relate to an extent. After the birth of our daughter, I found a small nodule on my collarbone and was diagnosed with cancer 4 weeks later. I went through 5 months of chemo, and despite having clean scans for well over a year, I still freak out all the time whenever anything is wrong.

It's easy to tell someone not to cry because it's not productive, but it's your way of dealing with it, so cry as much as you want if that's how you're coping. I had the opposite - I never cried even when I wanted to.

Two things I would recommend:
1. Stop getting on the internet to research your conditions (or supposed conditions). It made me so much more scared because I'd find all the horror stories of people NOT doing well instead of people who are.
2. See the specialist (and another and another and another if needed) to make sure you're getting the best information. Ask about any clinical trials that may be taking place into which you might be able to enroll.

One thing that really helped me through the cancer ordeal was knowing that no matter how bad it was for us and how much it sucked, someone had a worse prognosis.

The other advice: live every moment with your husband/daughter to the fullest. Don't forget to tell them that you love them and to make sure she has her own memories of you for the future.

Good luck, and please keep us posted on your developments.

first, i am going to tell you to STOP the crying. our disease feeds on stress and crying doesn't help! i was diagnosed in the summer of '06 after all kinds of symptoms as well. after a battery of test, my lupus biopsy came back positive. i cried, too and thought of my small son. but i did lots of research and spoke to a cousin who was diagnosed a couple of years before me and i soon found out that it is controllable. i'm not sure if you decided to take any medications, i decided not to. i basically control mine by getting lots of rest, exercising and staying positive. i met a woman who has not seen a rheumotologist in 30 years and has been doing the same. please trust me. you can live with this and have a full life. it's up to you to be happy, positive and if you can, turn to God a little bit more. it doesn't hurt, right? take care and lots of love and blessing to you! you'll be fine!

My daughter is only 20 and last summer tested positive for Lupus right now they cannot confirm it is Lupus until she starts developing more symtoms. From what I understand many women would test positive one time or another in there life. The only way to be sure is to have additional blood work after a year to see if you our still testing postive and if you are showing more signs. Right now all they can tell us for sure is my daughter has an autoimmune disease. Neddlesss to say I have done alot of reading on Lupus and caught early you can live a healthy life. Things will start looking up. Just give it time.

.

Hi J.
You say you are praying and that you believe in God.
Now is the time to rely on your faith. I had a year that sounds like yours.
After 3 surgeries in our house and the MD saying that our son was not going to live, I too was scared and wondered where to turn.( Before I go on I want to say that was 33 years ago, and our son is a lawyer, married and his wife is having our 2nd grandchild.) So many said "pray pray pray" but the truth was I no longer knew how to pray and I wonder if you are there too. So I will say when a person with "faith stronger than mine" said the Bible says if anyone lacks wisdom all they have to do is ask and God will give it to them liberally. Yikes, I said "Lord, I don't know how to pray any more, ..... " Do you know that God answers? Well in my mind's ear I heard an answer. I prayed it and my life and faith was changed forever.
I know you would like the answer to be wrong and it came as a shock but lupus and lime are just what the MD says. What does God say? I once looked up info about lupus, never lime but veggies, and no sugar are helpful for everyone including those with lupus. My friend kept a kettle of boiling veggie mixture on the stove always and when the hunger pains came she got a dish. It eased the disease, she was old and I don't know all the particulars, but she was sure happier once she got to through the normal stages of any bad news.
I will pray for you, but Can I ask my church to pray for you as well?
God bless you and give you peace.
God restore J.'s body completely, for by Your stripes we are healed.
Write me

It's a hard thing to handle...I too have just been diagnosed with Lupis after a couple of years and just started medication last week. I was told "this isn't a death sentence" by my Dr. that the medicine will and may take 6 to 8 weeks to work. But, it will get better. Rest when you need to your daughter is 3 maybe if she still takes naps take one too. I've been reading up on this with the Lupis Foundation and you do need to rest to have your muscles recoup, then less pain. I found that moist heat helps with the muscle aches. Hope this helps.

I also had fibroids but in my uterus had to have a hystorectomy got an infection from the disolveable stitches. It is hard to hear anything that you get that there is no cure but remember it is managable.

My prayers are with you!

Oh sweetie! I know exactly how you feel!! I was finally diagnosed January 2007 after my daughter's birth on November 2006! & like u I cried a million & one tears & was so scared! I'm still scared! But I went 2 see a rheumatologist who has been God sent - a true Angel and on September 2009 I gave birth to a healthy baby boy - my 3rd child!
Yes life is challenging @ times & we don't have any family help but God gave me strength& a wonderful husband who knows whoout being told when I need help w/ the house or kids!
As for the Lupus - become informed, research, join the Lupus Foundation website. Lupus does NOT mean a death sentence & you may not have the Lupus that attacks the organs. Mine attacks my joints like rheumatoid arthritis does but a bit worse. It's Systemic Lupus. When you see the specialist if he's good he'll explain it in details so you can understand.
If you just need to talk or vent please email me! ____@____.com I wish I had had someone to talk to in the begining and instead ended up w/ Post pardum & bad depression! But God is good & things got better & they will for you too! Hugs!

J.,
First of all you are entitled to your meltdowns. What you are going thru is completely normal - so don't ever let anyone minimize how you are feeling. The best thing to do is exactly what you plan on doing, and that's meeting w/a specialist. See what medications are available, see what treatments may bring you some relief.

No one has the right to judge you or tell you how you should feel - not unless they know exactly what you are going thru by experience. Maybe once you find out exactly what is going on w/your health, a support group may be a good idea. You wouldn't be going there to have someone tell you what to do to fix things, but maybe to collect suggestions that may work. You can pick and choose what you come out of there with.

I could write forever, as I have had many medical obstacles to hurdle over as have my husband and 12 year old daughter. I am like you, I believe in God but my faith is far from where it has been in life. Sometimes people tell me not to worry about my husband's next cancer procedure because it doesn't do you any good worrying over something I can't control - well, having 2 daughters (6 &12) I do worry & i will worry up until the day i am no here to worry.

Keep your chin up and if you need anyone, please don't hesitate to email me.

G.

Faith or no faith, this is really scary and you have every reason to freak out. So cut yourself some slack.

I just wanted to say that my best friend was diagnosed with lupus at the age of 30 after the birth of her first son. She has since gone on and had two healthy pregnancies and healthy children, and, in addition to having three children under the age of 4, works full time as a high school teacher. Lupus is not a death sentence, and doesn't even mean that you can't live a healthy life.

I'll be thinking of you.

I am so sorry to hear your pain,this is a very bad time in your life but there are many things you can do for both illnesses.You have to be strong,for yourself and your daughter-if you definitely do have these diseases-then you will find the right people in your life to help you-there are alot of options out there and I know alot of people who have lived long lives with both diseases. Healthy eating is a start-and there are many other things you can do to control these things.I truly believe in the power of prayer and try not to lose tour faith-you really need that.Thing will be brighter for you and your little girl-Good luck to you-you will be in my prayers-R.

Hi J.,
You definitely have been hit with a lot, and it does always seem like the troubles of the world gang up and kick you when you are down. You got good advice from people who know people living with Lupus, and I too have a friend who was diagnosed with it 20 years ago and has since raised 5 kids, and while our lives went different directions, I still hear from family that she is doing well.
Maybe you are just venting, but it sounds like, in addition to the other things you are dealing with, you may be depressed as well. If you are on a hormonal type of birth control - the pill, depo provera, the mirena iud, etc, I would try to switch to something else. If you are not on a birth control, I would bring up your depression issues to either your gynecologist or md, and get your hormones checked out. I was post partum due to BC after my daughter was born, but I didn't really notice HOW depressed I was until she was a year old, and really, in the beginning I was fine. Once I got my hormones straightened out, the depression went away, and it's AMAZING how much better you feel. Sometimes you don't even know you were depressed until you are not anymore, and then you think WOW, I'm normal again, I've got my old self back.
I've had tough years since then, my mom got diagnosed with cancer and needed and received a bone marrow transplant, my husband went to the hospital with heart problems, and my father in law died, all within a very short period of time, and when you receive blow after blow, you do feel like why me? So, maybe you don't have depression issues, but I would look into it. Like I said, once you rid yourself of the depression, it's like a giant weight has been lifted from your shoulders, one you may not even know is there until it's been removed. And for me, the depression was all hormonal and did not require any drugs like Paxil or prozac or whatever the drug of the day is. I just switched from the BC shot to the pill, was on that for a few months, until my hormones were back to normal, and haven't been on any since. (I had stopped the shot myself for 6 months without switching to something new and that didn't help - depo seriously messed up my hormones, but that's an issue for a different post).

Best of luck with your Lyme and Lupus diagnoses. It's early, both you and the doctors will need to find out a lot more information before you really have to worry about them - as scary as it is right now!

Hi, J.,

I had a good friend who had had lupus all her life when I met her in her late 60's. She lived to be near 90, and other than having to avoid a couple of foods that triggered symptoms, and having a regular spiritual practice to help her stay calm and happy, she stayed about as healthy as any older woman I knew.

For most people, finding a calm center out of which to live can help keep symptoms in remission. You might want to look into an actual physical practice, maybe yoga, that can teach you this skill over time. And you almost certainly have time to work this out. Many people find that a serious illlness becomes a surprising gift over time – it teaches us to treasure every moment that we have right now, and not live in some imaginary future or past.

When I get really bad news, I have learned not to say, "Why me?" I would truly not want all the bad news in life to have to land on everybody else but me. So now I say, "Why not me?"

All the same, I am truly sorry to hear you've received such a difficult diagnosis. I hope that once the shock abates, you'll move forward and make the most of your singular, precious life.

J.,
You poor thing! I bet you want to crawl into bed and pull the covers over your head! I don't blame you at all.......But don't do it.

I know fine women living with lupus that have found ways to feel healthy and are living long wonderful lives. Your life is not over by any means. Attitude is everything. There are many ways to fight illness, if indeed the specialist confirms this is what you have going on. New medications and treatments are coming to market practically daily, so there is absolutely no reason to feel defeated.

I have my own small health and wellness business and I see people have recoveries with natural methods all the time too. I'm a believer in a combination of medicine and natural. My own sister-in-law suffers with lupus, but through supplementation I have helped her regain her energy so that she can be an active mom of two young children, work full-time and be on the board of the PTA! Don't let anyone or any doctor tell you that you are limited. Do the best you can to think positive. You will move forward! Let me know if I can help.
P.S. my son has seizures. They aren't just febrile. Yes, it hurts, but again attitude is everything. He does not let them stop him. If indeed you do have lupus you don't have to let it stop you either.

Dear J.,
I just want to start by saying that I never respond to blogs and I seldomly read these postings, but when I read your post, I felt you touch my heart. Although I cant comment on your health right now, I would however want to comment on your question to God "why me?" First you have to understand that God does not intend for us to be unhealthy or to suffer, God loves us very much. This might sound strange to you but the only way to answer that question is through seeing yourself, your true self. We all come to this world and half the time don't stop to think why we are here or what our purpose is. When you begin to search for God's essence in you then you begin to accept his will and through this you begin to live your life with purpose and with harmony. I understand it's not an easy road you are on but if you allow yourself to be consumed by and attach yourself to your disease it can start to control you. Don’t give up! Never give up! I am here if you want to talk.

With love,
Lili

Please believe me when I say this, YOU ARE BEING VERY STRONG! Your strength shines through your words. My heart goes out to you and your family for the pain that you are enduring. I wish you all the best. It's important that you are looking for support anywhere and everywhere.
Keep fighting!
You are in my thoughts and I hope life takes a positive turn for you!
Big Hugs!

First you need to sit and catch your breath. Febrle seizures are
common in children. Now you know, if she starts getting sick you
do your best to keep her temp down. The are scarey but not dangerous.
Viral infections too are common. You are probably getting sick because
of your stress level. Cystic breasts are very common too; painful at
times but you should find comfort that there is nothing wrong with them.
Stay clear of caffeine. Back aches can definitely be stress. As far as
the Lyme and Lupus have them redone and take one step at a time. You
seem to be getting crazy about things without any info. Stay calm.
Positive attitude can change lots of things.

As with any bad news like this, cry it out, seek others for support and venting then INFORM yourself. Once you are done crying you will have the strength you need to FIGHT and the only way you can fight is if you feel ALL your emotions, cleanse yourself of them as they come and arm yourself with knowledge. Reach deep within you! This is all the early stages. Take it one step at a time, be strong, have faith, even if it is questioned, if you have any, then use it and don't worry about how strong it is. God Bless and be strong!