Hello All;

I haven't posted in a long time and am at the point where I need some advice. You may not believe this, but here goes;
I have had the following:

14 surgeries for female troubles
4 eye surgeries
1 sinus surgery
8 sets of ear tubes (minor surgical procedure)
ulcer
hernia
intestinal scope
surgery for appendectomy
need surgery for carpel tunnel syndrome in both wrists
monthly sinus infections-sometimes less, sometimes more
narcolepsy
there is more, but can't list all of it

So you get the idea, right? The female stuff is behind me, but the eyes are still a problem, need another sinus surgery, ear tubes are an annual event and used as prevention, medicine for hernia, ulcer, narcolepsy, etc. All this and CVID too!

I infuse w/ Vivaglobin weekly for my CVID. It has helped and provided relief specifically during warm weather. I don't think I have had a healthy day in the last fifteen years. This isn't unusual by any stretch of the imagination. I am so sick of all of this. I actually bought a lock box so my daughter doesn't see all of the medicines I take and think that this is what everyone does.

There are times when I get pain in my back that brings me to tears. I fall asleep at the most inopportune moments. I can't ever breathe right. I can't remember anything! And the list goes on.

Is anyone this bad? My doctor tells me to be happy, that it could be worse. He's right although it's much easier said than accepted/lived. I have a good marriage and family. My religion is solid and so is my job.
But when I'm sick everyday I certainly can't appreciate any of this. I can't explain this to people and you couldn't tell by looking at me. But inside I'm falling apart.

I don't know what I expect from this post other than a little support from someone. Is anyone the medical nightmare that I am? Is anybody sick of being sick all of the time?

Lyn

Lyn,

I'm so sorry to hear of how you are feeling right now. You are in no way alone though (unfortunately I am right there with ya! I am also so SO sick of being sick. I do have my down days, but there is something inside of me that says things will change. Maybe I'm a hopeless optimistic, but I choose not to listen to the doctors when they say all I can do at this point is manage each infection as it comes...that there's nothing else to give me to improve my quality of life. I have CVID and have had a bad reaction to IVIG two years ago and haven't had an ifusion since 9/06. I take flagyl on a monthly basis now...I am fighting to try scig though and may fly to CA to receive it if I can. I also have PCOS so I understand the female problems as well (wish I didn't Like you, my marriage and faith are both strong and keep me going. However, I am completely unable to work. So, this disease has really affected my family financially as well as physically and emotionally. I have three kids, ages 10, 8, and 4. I am sleeping so much more now, about 12-15 hours a day. I can't get through a day without resting often. The hardest part is not being able to do the things I used to with my family. My husband has almost had to completely take over. He takes the kids to sports and other events as it's honestly too painful and exhausting for me to to the simplest things. And, like you, I look "fine" on the outside, but falling apart on the inside. A very low point was when my four-year-old asked me why I didn't like to take her to pre-school anymore why I like to lay in bed instead! I explained things to her as best I can but it's a fine line of not wanting your kids to feel rejected and not wanting them to worry about what's really going on.

I was in the ER a few weeks ago with a massive GI bleed and they gave me percocet and medication for ulcerative colitis. I was explained by the GI doc that Crohn's disease/ulcerative colitis are part of the course for many people with CVID. My body cannot attack any illness, but suddenly it can now attack its own GI track! I've lost about 15 pounds in the past month because of this. I am now reading the book "The Makers Diet" and it's got a lot of great information. A friend with Crohn's is doing really well following the book's diet so I'm giving it a try. I've already cut out gluten, dairy, and processed sugar years ago. Another thing I'm going to try is an oral surgery. I had my wisdom teeth removed in 1990 (the teeth hadn't come through the gums at that point) and apparently you can get a systemic infection after having your wisdom teeth removed. I saw a nutritionist who pointed me in the direction of a dentist. He did a panoramic x-ray that showed shaded circles of infection where all 4 of my wisdom teeth were. Basically you can get a systemic infection that takes many years to develop and it will not be erradicated by antibiotics due to the hard tissue around the jaw. The infection is now in my jaw, though I have NO pain in my jaw (just everywhere else in my body). This type of thinking regarding immune problems is not mainstream medicine but it makes sense. The dentist stated that he's seen people experience miracles after having a surgery to clean out the pockets of their jaw, but he also cautioned that some people are still sick afterwards. I don't know if this applies to you but I would check with a good dentist if you've ever had any teeth pulled or had any root canals. Once I have this surgery I'l post results on this site.
I'm not giving up hope, but I do have my days where I think about how quickly I've gone downhill and I wonder how much farther can I go and still somewhat function. I won't give up the faith though and I know that I'm on this journey to learn something and I obviously haven't learned it yet. Stay strong Lyn, we are our biggest advocates!

36 surgeries: four sets of tubes, correction of hole in ear
at least ten sinus surgeries
fundiclication surgery for acid reflux
all wisdom removed
tonsil and adnoids removed
adnoids removed second time
several others
Osteo Penia right now has third broken ankle
broke wrist in third grade
Hyper Mobility Muscle Syndrome
Hyper Mobility Nerve Syndrome
Lyme disease twice
On birth control or period never stops
Born with minimal hearing
Born with eyes not working together
Allergic to dairy, fish, latex, cigarettes, almost everything outside,
her own tears and her own blood. Has a kidney stone now.
Bones in her feet and ankles not right
Arthritis in spine, ankles, knees and fingers
CVID very low IgG levels just started SubQ yesterday after many years of infusion in hospital.
Always in pain, can't take gym, ride a bike, run, skate, swim in public pool. Had to quit gymnastics, horseback riding, wanted to take cheerleading and dance, told no.

She is 13 years old and made Honor Roll every marking period in first two years of Middle School even though she misses 30 - 50 days a year.

Just went to Relay for Life and walked five miles for her grandmother who lost her life to breast cancer last July. And thats with a broken ankle.

She is amazing and she is my angel.

We just found out, Shelbie doesn't have one kidney stone, she has six.