Thursday, September 29, 2005

You ARE The Weakest Link...GOODBYE!!!

Monday night the nutritionist called me and we talked. We made an appointment for next week and she told me to keep a food diary. She's not sure she can do a whole lot about my weight because it's mostly thanks to steroids but she says she will try to help me start feeling healthier. Very nice lady and I'm glad she called.

Tuesday I had the stress test and it came back fine. They didn't see anything wrong on the EKG or during the test and to be honest, it was one of those things where if I didn't have the MEN2a they would have told me it was nothing and that would have been it. Instead I was told that if it continues or gets worse to let them know and they will do further testing *sigh*. So basically, unless I fall over or something then I'm just suppose to now deal with feeling like someone keeps squeezing my heart and an elephant is sitting on my chest. Lovely.

Wednesday I took the kids for their bloodwork and the girl squeezed me in as well so I wouldn't have to go back today. I was all for that! LOL. So we should know within a week the results on all three of us. I didn't get to have them include the PTH and calcitonin tests but I'll get those done for sure before I go anywhere.

Today I went to my appointment with the pain specialist. He finally decided to take me off the Cymbalta (I went off it three weeks ago), wanted to put me on Lexapro instead, told me to double (in other words take 4 pills a day) the Keppra, and double the Elavil. Well, I never started the Elavil and definately won't now. I asked him why an anti-depressant to help me sleep? Why not a sedative or something? Supposedly the Elavil is suppose to help the nerve pain too. I looked it up and wouldn't you know that Elavil has a caution on giving it to people who are on thyroid hormones.

So that would be THREE medications he would want me to take when NONE of the ones he has tried so far have worked. Ummmm yeah, get right on that. *eyeroll* He honestly looked kind of ticked off that I said it wasn't working and it was mixed with one of those looks like "yeah right". He also told me that mood swings, blah blah blah is part of "depression" and its not just about wanting to kill yourself. I told him "That's nice and all but I became a bitch AFTER I started the Cymbalta not before so I highly doubt it had anything to do with it". He also asked if I still felt down and I told him "No, I finally realized that I'm not going to get help with this pain so I just have to suck it up, accept it, and go on. I told you, I don't get blue for long and if someone else doesn't help me then I say screw it and go on with my life". He didn't like that too much.

By the way, he didn't prescribe me the Lexapro which would mean he was expecting me to wean off the Cymbalta, go without anything for three weeks, and then allow another two weeks for the Lexapro to kick in. If someone reading this gets this then please, by all means explain it to me because I'm not.

Anyway- fired and I'm not going back. My MRI of my neck was fine and just showed some spasming was all but that was because my back was spasming while I was getting the MRI. lol. I have that appointment with Dr B next week so I'm just going to ask him to give me some Ultracet. It won't do much but it's non-addictive and will take the edge off the pain for a month or two at least. It's better than the four months of nothing I've gotten so far.

So on Tuesday morning I have an appointment with Dr B, in the afternoon Sis has one to be set up with him as a new patient, Wednesday afternoon Big B is suppose to be seen for new patient and to get something for his allergies. I may have to reschedule that one because it's around the same time Sis is at gymnastics and she tests on that day. *sigh*. I'll figure something out. Wednesday evening I have the appointment with the nutritionist, and I'm STILL waiting to hear back about Lil Man so I will be calling first thing Monday to rip someone's bum! This gets so old sometimes.

Sunday, September 25, 2005

Mi Vida Loca!

Just when you think things are settling down they go haywire again. First of all, Sis now has bloodwork on Wednesday with Big B. We're testing her for pheos again because ever since her thyroidectomy she has been having headaches. To be honest, after reading on the Ped Thyca board I think she needs to be put on a med other than Synthroid. Dr L wants her to see a neurologist but the soonest we can get Sis in to one is November. So I'm going to ask for a switch in meds until then and see how she does.

On Wednesday we had an "uproar" in our household and I started having bad chest pains. They got really bad and after not getting any better for two days I finally went to the clinic to get checked. I figured it was much safer to go there first and be sent to the hospital so they could inform the hospital about me than to just show up and let a hospital try to kill me again. They ran an EKG which showed an abnormality in the T wave but I guess 10-15% of people have that so it's not a big deal I guess. The chest X-ray came back okay and they couldn't tell me what is wrong with me. So Tuesday I have to have a Stress Test done and we will go from there.

They said they don't feel it is an aneurism, a heart attack, or anxiety but they gave me Xanax in hopes that my chest would relax and rest would make me feel better. It's now Monday and my chest is still killing me. It's a sharp pressing pain in my heart and it does get worse with stress.

Our schedule now goes- Monday: Nothing, Tuesday: my stress test, Wednesday: Kids get bloodwork, Thursday: I see pain doctor and then get bloodwork, and the next week I have an appointment with Dr B as do all three kids (Big B for allergies, Sis just for a check up, and Lil Man for bowel troubles). It's going to be tons of fun and that's just the appointments that are already made!

Thursday, September 22, 2005

Sometimes I don't even want to update anymore because I'm tired of posting messed up stuff. *sigh*

I had my MRI on Sept 6th and when I called the Pain Specialist for the results I was told "The MRI looked fine but showed some muscle spasming" and that was it. No, seriously... that was IT! Nothing else was said or done and I was told he would go over it with me at the end of the month. So again I have been left in pain. I may need those anti-depressants yet.

Dr. B said the acupuncturist was suppose to call me within a week but here it is over two weeks later and still nothing. I have called Dr B's office three times and been told each time "Dr B says Dr Chang will call you". Gee, thanks.

Dr B's office was also suppose to refer me to a nutritionist. After over a week of hearing nothing on that one I called twice and was told "Mrs P is the nutritionist and will get ahold of you".

All I want is just to feel better. I want the pain to stop, I don't want to constantly gain weight, and I don't want to constantly feel like crud. Oh yeah, and I want doctors to actually CARE. Fat chance I know but I can dream can't I?

We tried weaning Big B of the Rocalcitrol and his calcium levels dropped so he had to go back to everyday. He was upset but not much we can do. The poor kid becomes hypoparathyroid everytime we drop the Rocalcitrol on him. He gets his levels drawn again next week to make sure everything came back up.

So next week is a blood draw for Big B, one for me for my thyroid, visit with the pain doctor to get my MRI results, and I think that's it so far. Fun times eh?

Friday, September 02, 2005

Doctor Appointments/ Updates

On August 30th I had my blood draw for thyroid levels and they came back still supressed which I guess means I'm still hyperthyroid. They were at the borderline level though so we're going to keep me on the 125mg I'm taking now for 4 more weeks, do another blood draw, and if I'm still borderline or more then I'll be going down to 112mg.

On September 1st I had my appointment with the pain specialist. What a crock to say the least. Very nice man but either very stubborn or he just doesn't care to listen at all. I told him I stopped the Zonegran as I was having allergic reactions to it. I also told him how the Cymbalta was making me feel. He didn't say anything about the fact that I'm in even more pain but instead prescribed me Keppra which is another anti-seizure med that is used for pain, kept me on the Cymbalta, and then added ANOTHER anti-depressant to help me sleep at night.

This was very discouraging and I left in tears. He also keeps pushing the depression thing and seems to get frustrated when I say that I'm fine. He even said that if the Cymbalta doesn't start working then next he will refer me to a psychologist. FOR WHAT??? This is just becoming a nightmare. The new med is also suppose to take about a month to start working so that will be four months I have been left to hurt nonstop and it is truly wearing on me.

I have not filled any of the prescriptions yet and actually started tapering myself off the Cymbalta before the appointment. I truly did not think he would keep me on something that was causing severe mood swings and not doing a single thing for the pain. There is no reason for me to be on it, I will not further upset my family by having someone who is usually the cool headed quiet one acting like a witch with a B, and it has had 6 weeks to do it's job. It's not, he's not listening, so I will be the one with a brain here.

I will fill the Keppra script and try it but I will not put myself on a second anti-depressant to sleep. I am not sleeping because I hurt. If he would take care of the pain then I could sleep. I feel very uncomfortable being on two anti-depressants when I don't have depression in the first place and the first anti-depressant is not working for pain in the second place.

At this point Vin and I are discussing firing him and figuring something else out.

On September 2nd I had an appointment with the new general practioner, Dr. B. I figured it was time to get set up with a primary care doctor plus he knows our history, has been "onboard" since the beginning of all this because it was his physician's assistant that saved our lives, and he is already Vin's PCP. Dr B is also an osteopath so I knew he wouldn't just shove pills down my throat if I asked for something else.

So I went to him to ask for alternative ways to help with the pain while I wait for this "long term" bull, to get an emergency inhaler because since we've moved in here I've been having asthmatic symptoms (first time in 4 years but no surprise considering there is mold under the sink), see what his thoughts were on the Cymbalta and what Dr P is doing, and also to tell his PA thank you for saving our lives.

Dr B is going to try to get me in with the only accupuncturist in town to help with the pain. The guy usually doesn't take new patients but we're hoping he will bend this once. I am completely excited about this and keeping my fingers crossed because I have been wishing I could see an acupuncturist for a long time now. I just have more faith in alternative meds than I do "advanced" at this point. Anyway- I should know Tuesday or Wednesday on that. He also gave me the card for a guy that does what I guess you could call "visual meditation". He is in Atlanta but will do a consult over the phone to help out someone like me. I have to see if insurance will cover that one though. Not too sure but it sounds like a great idea too.

For the asthma problems he not only gave me an emergency inhaler but also started me on Singulair for a month to see if that helps. He said with the fact that my immune system is supressed it only makes sense that environmental nasties would be getting to me too. So the Singulair is to help build a "bubble" for me and strengthen me against the environment thus keeping me from becoming a sick wheezing ball.

Dr B said that it sounds like Dr P is doing everything he should be as far as what he is prescribing me for pain. He said that while nice, Dr P is very stubborn and that I just need to keep trying to get through to him that I'm not happy with the Cymbalta and want off it.

A thing that shocked me is that Dr B told me to get in for a pap test (gynecologist) to check for cervical cancer. I wasn't expecting that one but he said it's a possibility for me and I trust his judgement.

I also finally got to thank his physician's assistant, Brad Ridge, for saving my life. I was in tears and he was almost in tears which was kind of cute considering he's a tough looking guy that you wouldn't expect to get teary-eyed. I told him "I was so mad at you for forgetting that pregnancy test because back then even though realistically I had no reason to worry, that was the worst thing that could happen in my world. Now... well I'm very thankful for you and I'm so glad you ordered all the tests that truly mattered". I thanked him also for saving my children and he asked how things were going and said they had kept up to date on us and followed our story. He asked a few other questions and then said if we needed anything at all to let them know. It was honestly very humbling for me considering how irate I was a year ago and how badly I bashed him. :(

By the way, I got to thank Brad exactly one year to the date after this all began. It was September 2, 2004 that I walked into that walk in clinic and he ordered that ultrasound. Kind of neat I thought.

Anyway- so that's the update for now. I have an MRI on Tuesday (September 6th) on my neck to get a clear picture of what nerve damage I have in my neck. Dr P actually ordered that when I told him about my pain in my hands and legs. On September 7th, Bret has a blood draw and if his calcium level is still good then he can go off the Rocalcitrol/Calcitrol. Then we will test again in three more weeks and if still good then he's off for good. So please keep your fingers crossed for him. We're really wanting that poor boy to not be hypoparathyroid for once.

In a few weeks I will be getting the pap test for cervical cancer, heading back down to Tampa to get this thing out of my forearm, have to schedule the surgery for the intestinal tumor, will also try to toss in a hysterectomy in there for several reasons, and will be getting another draw for my calcitonin levels and intact PTH. I keep hoping they will just stay where they are for once and quit rising. That would be nice wouldn't it?