I'm so angry about being sick that I could just scream

[metamit]

There are some days I can grin and bear it, but then I get a day like today and I just can't take it anymore.

I am a 32 year old woman who up until a year ago was a normal, healthy woman. About this time last year I began to have fatigue, but I actually didn't think much of it (holiday season, lots of working, just a lot too do as mom of 4 kids and full time business). So the last week of January, 2008 I had to go in for a follow up mammogram for a lump they had been watching. That was my last of 3. They diagnosed it as an inflamed lymph node and I moved on. Then a few days later I had crushing pain in my chest into my neck and left shoulder. I ended up in the ER the next day and they diagnosed it as Pleurisy.

I thought, OK, I'll get over it and be fine. Not so - that sparked bouts of sever fatigue, awful edema in my hands and feet and shortness of breath (we live in a bi-level home and I get winded just walking up the stairs).

At first the symptoms seemed to come and go in about 2 week stretches, each time I thought would be the last. Finally this summer the edema in my legs and feet got so bad there were days it was nearly impossible to walk. I also started getting these awful little red spots and spider veins all over my face, my chest, arms and hands. I started having digestion problems, but they couldn't find anything in an Ultasound or CT Scan. Another visit to my GP without any answers and I requested to see a dermatologist. By now the fatigue was really bad and the heat of the summer seemed to make my edema unbearable.

I finally got in to see the dermatologist and she said that all this is being caused by autoimmune (my skin was getting really bad and she assures me it's not a skin condition on it's own). She did an ANA and my Rhuematoid Factor. The ANA was negative but my R/F was high. My GP had run my R/F in March and it was not high then. So she sent me to a Rhuematologist.

So now I see the Rhuematologist who says he doesn't know what it is. He did some tests and said it's not Arthritis, and that he doesn't think it's Scleroderma yet, but that it could be brewing. At that time (in August and September) I wasn't having "joint" pain, just general aches and spasms in my legs and left arm.

Well, then the pain in my knees and elbows and hands started setting in, which I still have today. Meanwhile, my Rheumatologist will only offer cortizone shots when I'm begging him to please treat what's causing all of this before I get worse.

Today this is a day-by-day struggle. Some days my fatigue is so bad I can't function or think - it's like my whole body just wants to shut down. My skin is worsening by the day, with the spots (which I now know to be angiomas and purpura) and I'm getting indents in skin of my right leg and right pinky. I still suffer from edema, though I found that it's usually worse if I get too warm. I get stiff if I stay in one position too long, and my hands are giving me a hard time - even doing house hold chores is becoming a challenge. I did get the care of a Pulmonologist to help me with my breathing problems - after a CT scan showed some fibrosis in my left lung. I have to go for another CT scan next week, and I got my new GP to help me find another Rhuematologist for a 2nd opinion. We did an ANCA test and another SED rate (my SED rate has been high the whole time I've been sick) and my ANCA was positive for a-typical ANCA, which tells us somethings wrong, but doesn't tell us what.

I don't think my doctors are understanding that all I want is to get well - my dermatologist was the 1st doctor to say "something is wrong here" and now that she's validated that - it seems like any doctor I see just throws their hands up and says "I don't know - let's wait and see". I don't want to get sicker - I don't want to be disabled and at the rate I'm going I don't know what will happen. They did treat me for Lyme's diseases, but none of the symptoms went away after the treatment.

I'm just at a loss and today I'm just mad about it all. Why am I sick? Why me? I just want my life back. I'm tired of being tired, I'm tired of being treated like an outcast at the doctors. Can you believe my Rheumatologist asked me if I've seen a dermatologist when my dermatologist is the one who sent me to him?

How do you cope with this? It's been a year, and yes - I do understand there are people sicker than me, and that things like this can take time to diagnose, but isn't there anything that can be done in the meantime?

I'm one who always stays optimistic about life. I've come to far in life for it to fall apart now. I've made up my mind that I'm not going to let this cripple me - whatever it is - but I can't get passed being mad and I can't seem to find anyone to help me figure this out.

Thanks for letting me vent - I really needed to get this off my chest LOL I do see another Rheumatologist later this month, and I'm just hoping he will know what's wrong. It's just trying to hold on until then -

[tmm]

Hey there, I don't have any answers about your condition, but I just want you to know that I too am a 32 year old woman (mother of 3), dealing with a painful something for the past 2 months, and doctors who don't seem to be shedding any light on the situation, and I understand how frustrated you are feeling, especially when it comes to the kids. I just want to be normal for them (and my husband). Hang in there, I know you have the strength to adjust to this until they can get it figured out.

[metamit]

Thanks tmm - it's good (I mean't it's good but it's not) to have someone who can relate - we're too young to feel like this - my heart goes out to you, too. Have your doctors run any tests or anything?

[tmm]

Hey, I know what you mean about it being good but not good to find someone our own age, both mothers, with a profession who are in the same type of situation. I had a pneumomediastinum (air in the chest around the esophogus) at the end of September. They think it was caused by a perferation of the esophogus, but they're not entirely sure. I went for a jog that morning with the kids and didn't feel funny until the afternoon, but I have no idea how I did it. They hospitalized me for 8 days on just an IV drip (nothing by mouth), and finally on my third CT scan they said the air was gone so I could go home. The problem is, that I've been having the same chest to back pain (on my left side) that I had when I had the pneumomediastinum, since then. I've had 4 CT's now, 2 chest x-rays, 4 or 5 swallows, an esophogeal scope, and two abdominal ultrasounds (I probably glow). Last week the pain started to go down my left arm and my blood pressure went up (it's always been normal), so I saw a cardiologist and he said it's not my heart. So now I'm waiting to see a thorasic person to see if this is normal, a physiotherapist to see if they can help, and someone for the nerves in my chest wall. I lost a great deal of weight from not eating those 8 days and medication of any kind and I just don't go well together. The most I've ventured for since I've been home is tylenol but it hardly takes the edge off. I don't want to be woozy while I'm with the kids either, so I just cope the best I can. But its tough isn't it. Not having the answers you need and feeling like ****. I just keep praying that one day I'm going to wake up and not feel it, or they're going to figure out what it is and treat it, and I pray that for you too.

[metamit]

Oh - wow - my problems are minor compared to yours - let me know how it turns out - I'll keep my fingers crossed - I think that's the one thing that doctors forget - that we were once healthy people and that having things turn really affects our whole being, our families, our friends.

Geesh - you'd think with all of the modern technology and studies, things would move quicker.

[metamit]

Thanks - my Lymes tests (all 4 of them were negative) but I was treated for it anyway and it did nothing for me.

[tmm]

It is frustrating knowing that we were two totally healthy women and now we're dealing with this. It seems pretty logical to me, you don't just go from healthy to not healthy without there being some kind of a problem. My husband and I agree that we have to convince someone in our family to become a doctor so that in times of sickness we'll all have someone who we care about and who cares about us enough to take a vested interest and help. How are things going today? How is your family doing? Any upcoming appointments? Have you ever been to a naturopath? I think you should consider it. I've heard a lot of amazing things and at the very least a consultation wouldn't hurt. A friend of my husbands is a Chiropractor and his wife is a Physiotherapist. I went and saw them yesterday and he thinks my pain could be muscular/skeletal, so I'm going to start seeing him everyday and see if it helps. We are both going to get better. I know we can do this!

[metamit]

This weekend was pretty rough fatigue and pain-wise. I go for another CT and PFT on Thursday and then on the 26th I see a new Rheumatologist for a 2nd opinion. It's hard on my kids, all of this. They see a mom that went from "supermom" to struggling to get through a day. It's put a lot more stress on my marriage (there was already stress there, but now it's worse). But I'm hanging in there - I'm gonna get my life back! LOL

I've been looking into natural therapies to help cope, I live way out in the rural area so we don't have a whole lot available to us here. Even my Rheumatology appt. is 3 hours from here.

[tmm]

Wow, 3 hours is a long drive! I always thought we lived in a rural area, but it only takes us 20 minutes to get to a small city and and a little over an hour to get to a big one. Have you thought about going to a hospital in a big city and having them take a look at you? If my chiropratic care doesn't help that will be my next step. Many people have already suggested it to me and it does seem logical that a doctor in a big city may have had more different experiences and dealt with a larger variety of health issues because there are so many more people. I totally understand how hard it is with the kids. I've completely stopped discussing my health and discomfort in front of the kids. It is a little tough though when I'm with them and someone asks how I'm doing, I try to change the subject or make it sound like I'm fabulous! I know everyone means well, and cares, but unless you're in it, you really don't get it.

[metamit]

Yeah - the 3 hour trip is to the University hospital - we have hospitals and clinics 1/2 an hour from here, and that's where I've going and they haven't done anything. That's why I'm making the 3 hour trip - it was either U/W or the Mayo - but my GP is part of the U/W. I'm hopeful maybe they can help with this. I HAVE to get better by Summer, summer is the worst for me because I swell so bad.

Let me know how the Chiro works out - but I'm with your friends - maybe seeing a larger hospital would be worth it for you too?

Hang in there ....