Wednesday, May 07, 2008

Where To Start?

The past few weeks have been busy, crazy, emotional and mysterious. My trip home was a spur of the moment one and because of the sensitive nature I won't be explaining why. I went to be supportive and show love. Unfortunately amongst the good times the Wease family has the ability to host it's own Gong Show and things went back and forth between good and bad. All in all it was nice to get to visit with family but I was only able to see a few friends due to the family drama that kept coming up.

And then I was home.

Now one might think that this would be time for relief and relaxing, maybe even a quiet time to reflect on all that took place on my trip but that is not how my life seems to go and I am about to explain the events that have unfolded leaving where I am today, confused & at a loss.

A week ago Sat, I started to get a sore throat. Since multiple members of my family were getting over bouts of strep throat I suspected I may have caught it but since I was returning home in a few days, there was no point in being seen there. I saw a doctor the following Thursday and had a strep test done. About 3:30am Friday morning I awoke with the worst headache of my life and took a migraine pill for it. At 5:10am I awoke again, no relief from the migraine but even more concerning is what woke me, my stomach muscles were contracting on their own. It was like I was doing mini crunches but I had no control over them. It wasn't painful, but it was very scary. The nurse Hotline told me to go to Emergency, so Jeff came home from work, we gathered up the baby and off we went. To make a long story short the ER doc just shrugged as my symptoms had all but disappeared by the time I was seen two hours later. She gave me some antibiotics for my positive Strep A test and sent me home.

I ate breakfast, took my first pill and went to bed. The stomach spasms started again but I was so exhausted I did my best to ignore them. They stopped, but not without something new taking their place. This time it was breathing. Instead of 7-12 stomach contraction in a row and the a break it was 7-12 deep, fast breaths and then a break. I got out of bed and called the nurse Hotline again and she had me rush to the doctors office. He ran tests. Everything appeared fine. Again I was given a shrug and sent home.

4:00am Saturday morning I awoke to horrible stomach cramping and then vomiting. For the next 5 hours my stomach cramped(not the same as the crunches but actual painful cramps) every 35-40 seconds. Yes I counted, I had nothing better to do. This I knew, was due to the antibiotics. They prescribed my a new one and the rest of Saturday was pretty much uneventful, but don't stop reading as the story is long from finished...

Sunday morning I awoke with painful hands. Now this wouldn't be odd as I am an arthritic but two factors made me concerned. 1. I haven't had a painful hand flare in years. 2. It was only in my artificial joints. Yup, that's correct the painful stiffness was only in the joints that are not even real joints. The joints that are fake, whose purpose is to rid of the pain of "real" arthritic joints. Make sense? See my confusion and concern? By Sunday night not only had these joints become more painful but the were turning red AND so did some of the surrounding joints. Once again, the abnormality is the new sore joints afflicted are only those I had fused as a kid. So lets recap. I am now having extreme pain in my hands but only in the artificial and fused(non-existed all together) joints. All other "normal" joints ate A-OK.

For those who know absolutely nothing about arthritis let me fill you in on something. Arthritis attacks joint tissue including the cartilage. These joints have no cartilage as they are not real/non-existent, thus this is a freaking mystery and of high concern to me. Once again I called my friends at the nurse Hotline and they said to go to Emergency if my symptoms worsened at all. They did, and at 3:30 am on Monday morning we were on our way back to the hospital.

After 5 hours in treatment I walked away with no new info. My visit consisted of the stomach spasm returning. In fact they returned while one nurse was putting in my IV and they were so bad she had to wait for them to pass. Nothing was done or said about them by the ER doctor. While lying in bed doped up with pain meds and trying to sleep I felt the breathing thing coming on again. I tried to ignore it but called the nurse anyway. I continued to call for the nurse for 40 minutes as my breathing became more rapid and of concern, and quite frankly I was trying to sleep and was getting annoyed with this stupid breathing interuption. Finally I got out of bed and stumbled into the hall, it was empty and due to my now complicated breathing issues I could not remain on my feet and went back to the bed were I made one last frantic call for a nurse through my now uncontrollable semi hyperventilating state. A nurse came. A male nurse who quite rudely asked "Why are you breathing so hard?" My response through strained breaths "YOU. TELL. ME! I HAVE. BEEN. CALLING FOR. OVER . 40 MINUTES." His condescending tone did not change and I was told, "Your hyperventilating. Calm down. I'll go get your nurse." And he was gone. 10 minutes later the ER doc showed up(no nurse was seen) and told me that the hyperventilating was likely the cause of the stomach contraction as the body takes over and does weird things. She also said they spoke to a Rheumatologist and I was just having an arthritic flare. Through tears of anger, frustration & fear I called her on her mistakes. I stated that I was no doctor but I am certain of a few things. I had the stomach contractions long before I hyperventilated. I felt the breathing issues start and tried to have someone check them out to no avail. This was the first time I actually hyperventilated and I had no control over it as it came out of nowhere. And lastly I have had RA for 30 years and this was NO FREAKING ARTHRITIC FLARE! I may as well been talking to my big toe. I asked her to try calling my hand surgeon, his deal is artificial joints maybe he would have some idea. Nope, she felt the Rheumatologists knew better and said I would be discharged, my husband, whom I had sent home hours ago with Asa, could come and get me.

Through tears I called Jeff from my room phone and told him all that had happened. I then proceeded to call Kaiser, yes I was sitting in Kaiser's ER but I was now calling my hand surgeons office only a 2 minute walk from my current location. My thought at this point was F&*K Everyone! There is something wrong with me and no one is listening! I guess I will have to do this myself. The operator told me Dr. E was in surgery but would be back in clinic this afternoon. I left the ER and walked over to his office and pleaded my case. I needed to speak with him ASAP. I was given a 4:15 apt. It was 1:30 so we went home. I slept. And then once again we headed back to the doctors.

Now I have mentioned Dr. E in the past, he's probably my favorite doctor ever. I knew it was a long shot that he might have some answers but he is one of the few doctors whom I knew would actually listen. And he did. And he brained stormed. And he called his friend the infectious disease guy. And THEY brain stormed. And I FINALLY felt like I was being heard. He agreed this was odd and that something was clearly wrong. Thank you! In the end he had me tested for Parvovirus which can give a false positive to a Strep A test. Not to mention as he listed the symptoms, as this is a common and non serious childhood "disease" also known as Fifths disease, Jeff and I looked at each other and then at Asa. He seemed to fit the bill of symptoms also. With my suppressed immune system it could be the cause for other weird symptoms including the hand pain and swelling.

As of today we are still awaiting results. Yesterday morning I was in so much pain, Jeff back at work as he had missed 2 days already, I ended up calling a lady from the MOMSclub and she came and took Asa for the day. I was in such bad shape I couldn't even change his diaper without bawling my eyes out. In fact I don't recall ever being in so much pain. I even had her open a bottle of Percocet while she was here and man did I feel much better an hour later. What was even sweeter, she was on her way to a club gathering which was a casserole swap and when the ladies heard about my plight, they sent home 3 casseroles for me, knowing I would have a hard time trying to cook. I was so thankful that these kind ladies gave up some of their dishes for us. I literally had no one else to turn to and I am so greatful to have this group. So if you are reading this, again thank you all SO much! What's even nicer is that they even discussed putting together an aid group for me, people to come and help out each day but as it turns out, the pain is at a minimal today. Not gone, nor is the terrible swelling but I can manage. If you only knew how long it has taken me to peck this all out...hahaha.

So there you have it. This is why I have been MIA. I have never wanted a positive test result so bad! If it's negative we are back to square one, not knowing what is wrong with me. It's exhausting and a bit scary but strangely this is not the first time I have had unusual symptoms to which the doctors have simply shrugged off, it's not the second or third either. This time however seems more concerning. But this is how my life seems to go and really, how boring would it be without family drama and hospitals?

Truly boring indeed.


Devon said...

WOW!!! Honey I am so sorry. Stupid Kaiser. That is so frustrating that they wouldn't listen to you and blew you off. Thank God that your arthritis doc listens to you. Is it possible for you to file a complaint with Kaiser?
Thanks to the ladies in the moms club for taking care of Asa and for bringing you food. You've met some great women.
I hope you get the results soon so things can start to get better. Hugs!!!

Zee said...

It's funny you mention arthritis doc, you see Dr. E is not my arthritis doctor. In fact I didn't include my trip to see my actual arthritis doctor last night, in this blog entry. I didn't bother to mention it because like the others he saw inflammation and thus called it a flare. I looked at him and said "Can you honestly tell me you have seen an arthritic flare that has only occurred in artificial and fused joints?" His response..."No, I guess I cannot." Truth is he had no clue as to what is going on and commended me on going to see Dr.E. He said that Dr.E and his call to the infectious disease guy was the best call. I think that's what's so funny. Dr.E is a specialist, a surgeon, NOT a doctor one would see for a check up unless it's post op...hahaha. But I just had a feeling that he would be the one who would listen, and he did.

I should send Dr. E a fruit basket.

Devon said...

well at least you got to someone who give's a rat's ass! you should defenitely do something for dr. e!!! call me when you get a chance! get better, you can't be sick when I come out to visit!!

Renee' Morris-Dezember said...

Danea I hope you start feeling better soon!

Karen~ said...

Bless your heart! I am sure you were completely frustrated. I think you were really nice not to give all of them a piece of your mind. I hope you are on the road to a full recovery.


Susanne P. said...

dang. when we talked you had just gotten your new antibiotics and thought you were on the mend. things sure can change fast.

if your test turns out to be positive i would go raise a shit-storm over at the ER. it sounds like they didn't even try. 40 minitues to see a NURSE is ridiculus!

if any of the moms-group is reading...thank you for taking such good care of my bestest friend. it's hard to live away from your family and you made it easier at such a hard time.

take care Danea and call me when you feel better. keep us posted on your blog about your test results.

Miss M! said...

Holy crap that sounds scary. I'd be pissed at the ER people too. I could understand if this was something that you had just developed recently, but you're right, 30 years of living with RA would make YOU the expert over some snot nosed nurse.

I'm glad that you had the moms group to help you. I'm also glad that your surgeon actually listened to you. I hope the doctors can figure out what is wrong so they can fix it.