How Many Illnesses is Too Many?

Well, yesterday I got the news that I have Long QT Syndrome along with pfo, or a hole between my ventricles. I don't know how many chronic illnesses I am meant to have, but this is getting ridiculous. Let's list them so far:

1. Rheumatoid Arthritis
2. Asthma
3. Diabetes
4. GERD
5. fibromyalgia (sorry, "f" key doesn't do capitals)
5. Long QT Syndrome
6. pfo
7. Hypertension
8. Migraines
9. Costochondritis
10. Osteochondritis
11. fibrocystic breast disease
12. Sjogren's Syndrome
13. Esophageal Dismotility
14. IBS

I haven't yet found a doctor who is able to manage all of my illnesses. This makes it very difficult to successfully manage any at all. One doctor tells you to take something, another says something else, another says something different - it's a very confusing dance that I partake in daily.

My wish would be to have a doctor who can manage it all. Maybe not handle all illness, but manage the information for me and ensure that I'm getting the best care possible. I do not have health insurance, so it's even more difficult.

Without insurance, you just cannot get long term care. You can go to the ER and they can keep you alive, but you cannot continue on with any doctor if you do not have the money.

It's very hard to deal with, especially when a new disease rears it's ugly head seemingly monthly. So - today I feel frustrated. I'm trying to work through the new information, getting used to the new medication, and trying to think of ways to better my care. I'm just one girl - and I'm not a doctor, so it's hard to know what the right choice is for my health and my well being.

The struggle continues daily....but I think I'm up to the task.

In my next post I'm going to talk about prescription assistance. I have over 15 prescriptions I need to fill each month. This does not include prescriptions for my family. Prescription assistance has helped us a bit. I will post some links that will be quite useful should you need assistance.

Thanks for visiting.

Jen

About Me

I thought I'd better start out by talking a little bit about myself. I mentioned before my and my daughter's physical challenges. We've experienced trying to obtain healthcare and support with and without health insurance. Currently we have no insurance and are struggling like so many others in this economy. My husband is working very hard and we are surviving each month with the help of my loving mom.

I recently obtained prescription assistance for myself from Pfizer. I will post in another entry where to go to find some great options for assistance. I'm still working on getting help for my daughter's prescriptions, but for now we're hanging in there.

We live in Utah currently and are looking to move back to our home state of Arizona.

I hope this entry finds everyone doing well. Please feel free to leave posts about yourselves. I'm going to think about my next entry and add some information about assistance options.

1st Post - Welcome

Hi everyone. I was diagnosed a few years ago with Rheumatoid Arthritis. Since then it's been a real adventure trying to obtain consistent and quality healthcare. As the years have passed a host of new diagnoses have been piled on top of the RA.

It seems that one chronic illness leads to another, then another, then another - gack! I'm now sporting RA, Diabetes, Asthma, GERD, fibromyalgia, Costochondritis, Osteochondritis and High Blood Pressure. I'm willing to bet there are lots of people out there experiencing something similar.

Not only have I been fighting the good fight to get care for myself, but my daughter was diagnosed with Epilepsy at the age of three. Moving from her first recognized seizure to diagnosis and treatment has been very tough. The worry, the fear, having so many questions with on answers - it's can be very lonely and very scary.

I have started this blog not only to share my experiences in hopes that some folks out there will do the same, but also to help support each other, and share tips in making our way through the healthcare maze with or without health insurance.