More About Me
How has life changed since your diagnosis?
I haven't had much time to process it all since I only had 3 of the above diagnoses dumped on me late last year. Ever since it seems the majority of my life is consumed with Dr's appointments and tests. I really have no life. It's hard to make plans since I never know how I'm going to be doing, and I'm on medications that make me drowsy.
It changes everything. The constant pain, sickness out of nowhere, meds and side effects of them. The fatigue when it hits is almost more debilitating then the pain. It's very lonely and not many understand the struggle of these illnesses since we don't look sick. I feel like I went from being 47 to 80 in the last couple of years.
One thing that keeps me going is the autoimmune disease support group on FB I founded. I also started a small business doing something that is my passion. That helps me feel like I'm contributing, takes my mind of the pain and gives me a sense of accomplishment. It's not always easy. There's lots I have to say no to, but at least it's something.
It changes everything. The constant pain, sickness out of nowhere, meds and side effects of them. The fatigue when it hits is almost more debilitating then the pain. It's very lonely and not many understand the struggle of these illnesses since we don't look sick. I feel like I went from being 47 to 80 in the last couple of years.
One thing that keeps me going is the autoimmune disease support group on FB I founded. I also started a small business doing something that is my passion. That helps me feel like I'm contributing, takes my mind of the pain and gives me a sense of accomplishment. It's not always easy. There's lots I have to say no to, but at least it's something.
What are you most passionate about?
My small business and my husband give me strength and keep me going. The support group I run keeps me going. If we didn't have bad days, we wouldn't appreciate the good day nearly as much.
What do you hope readers can learn from your health journey?
Be your own best advocate.
Research everything so you can make educated decisions about your healthcare plan.
Trust your gut. If you know something is wrong and you're not convinced, keep looking for answers until you find someone who listens.
Listen to your body. It will need a lot of rest.
Guilt is a constant battle with these diseases as is feeling like a burden. This is not your fault, you are sick and it isn't all in your head.
Take what others suggest such as xyz can cure you, with a grain of salt.
Don't listen to those who want to compare you to someone they know who is doing fine.
Hold your head up high.
Don't focus on the things you can't do.
Celebrate the things you can accomplish even if they seem small. They aren't small to us.
Our bodies have turned on us and are trying to kill us, that's a hard tiring battle.
Be kind to yourself.
Let your no be no. If others have a problem with that, it's their problem.
It's okay to cry. There is a grieving process that takes place. Our old healthy life is gone. That's a huge loss.
Find something you love to do, and go for it.
Research everything so you can make educated decisions about your healthcare plan.
Trust your gut. If you know something is wrong and you're not convinced, keep looking for answers until you find someone who listens.
Listen to your body. It will need a lot of rest.
Guilt is a constant battle with these diseases as is feeling like a burden. This is not your fault, you are sick and it isn't all in your head.
Take what others suggest such as xyz can cure you, with a grain of salt.
Don't listen to those who want to compare you to someone they know who is doing fine.
Hold your head up high.
Don't focus on the things you can't do.
Celebrate the things you can accomplish even if they seem small. They aren't small to us.
Our bodies have turned on us and are trying to kill us, that's a hard tiring battle.
Be kind to yourself.
Let your no be no. If others have a problem with that, it's their problem.
It's okay to cry. There is a grieving process that takes place. Our old healthy life is gone. That's a huge loss.
Find something you love to do, and go for it.
Diagnosis
At present I'm diagnosed with seronegative Rheumatoid Arthritis, Lupus, Raynauds, Osteoarthritis, and Epilepsy. I'm waiting for an appointment to find out about the possibility of Crohn's or colitis as well. I'm being watched by a Nephrologist as my kidneys show signs that lupus could be causing trouble there too. And ..I've been referred to a neurologist since I've recently developed a tremor along with some other neurological symptoms that have been with me a long time. Last but not least I've been referred to an ENT because I can't breath through my nose do to swelling.
I live with a ton of joint pain. I sometimes need crutches to walk. I have a special form of crutches as my wrists, elbows, and shoulders can't bare the weight on regular crutches. As you can see these diseases attack everything. Rheumatoid is not technically arthritis but causes a from of arthritis that deforms you. It attacks all other parts of the the body too.
I live with a ton of joint pain. I sometimes need crutches to walk. I have a special form of crutches as my wrists, elbows, and shoulders can't bare the weight on regular crutches. As you can see these diseases attack everything. Rheumatoid is not technically arthritis but causes a from of arthritis that deforms you. It attacks all other parts of the the body too.
Treatments
I've tried:
Methotrexate: Failed it. It caused auras, stomach issues, I couldn't breath on it and now have asthma, fatigue.
Plaquinel: Failed. It didn't help and affected my stomach.
Cellcept: Failed. Same as Plaquinel.
Immuran: Failed Same as Cellcept and Plaquinel.
I refused Prednisone. That's one drug I will not take.
Enbrel: Failed. Helped some but not enough.
Humira: Is helping presently.
Percocet: It helps with pain.
Dexlansoprazole: For stomach ulcers, acid reflux.
CBD and medical marijuana: Need to give this more of a chance.
Not supposed to take any anti-inflammatory medication. Bad for stomach and kidneys. However, they let me get away with one Advil a day.
Methotrexate: Failed it. It caused auras, stomach issues, I couldn't breath on it and now have asthma, fatigue.
Plaquinel: Failed. It didn't help and affected my stomach.
Cellcept: Failed. Same as Plaquinel.
Immuran: Failed Same as Cellcept and Plaquinel.
I refused Prednisone. That's one drug I will not take.
Enbrel: Failed. Helped some but not enough.
Humira: Is helping presently.
Percocet: It helps with pain.
Dexlansoprazole: For stomach ulcers, acid reflux.
CBD and medical marijuana: Need to give this more of a chance.
Not supposed to take any anti-inflammatory medication. Bad for stomach and kidneys. However, they let me get away with one Advil a day.
Carrie Godard
