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.
Thursday, September 29, 2005
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!
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?
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?
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?
Monday, August 22, 2005
Sorry that it has been so long in between posts. I've just felt pretty lost and down lately leaving me not wanting to post anything. Plus we've been moving.
As I said, the pain specialist started me on a combined regimen of Zonegran and Cymbalta. After being on the Zonegran for almost a month and a half and the Cymbalta for 2 1/2 weeks I called him and let him know that they were doing nothing for my pain. When I say nothing I do mean nothing. I am in just as much pain now as I was almost three months ago. His only reply was that I hadn't been on the Cymbalta long enough and needed to stay on it. Then he refused to give me anything at all to help with the pain until the Cymbalta supposedly kicks in. :(
At this point, I'm not a good person to be around. After almost three months of nonstop pain I am grouchy, short tempered with Vin, and just don't want to do much of anything because moving hurts so much. So much for the Cymbalta helping the pain much less my mood. Junk!
The only thing that came from that phone call was me ending up crying and them moving my appointment up a week. Needless to say that on September 1st the pain specialist better be ready for me because I'm at the end of my patience meter. I swear if he pushes basically wanting me to have depression one more time I'm firing him and just going to the general practioner to start over on regular pain meds. If this pain is suppose to last 4-6 months then by the time I make my way through them all again the pain should finally be gone.
First it was I had to give the Zonegran time to take effect. That was three weeks almost a month with no results. Then it was well take the Zonegran AND this Cymbalta for the next six weeks. Two and half weeks into that... nothing. You would think I would at least be feeling SOMETHING by that point but no. Continue taking it and see you in 3 weeks he says. Jerk!
So anyway- I'm in pain, still have this "thing" in my forearm because I haven't been able to make it down to Tampa, and I've been feeling pretty sick lately. Another lovely new thing that has come up is the fact that everytime I sweat I itch. If I sweat on my neck it feels like someone has wrapped a piece of fiberglass around my neck. It itches so badly and I break out in a lovely red rash. My old neighbor said she had heard something like that before and it was an allergic reaction to the person's own sweat brought on chemically from a med they were on. I got to thinking and stopped taking the Zonegran for a few days. The first day after I stopped we were moving and I sweat and itched but only about half as badly with the same red rash. The second day I only itched about 1/4th as bad as usual and the rash was alot lighter. By the third day I only had slight itching and no rash or pain. I could be wrong but I do believe it started shortly after I started on the Zonegran. I plan on calling the doctor AGAIN tomorrow and letting them know. If they'll even listen.
The kids had bloodwork done about a week and a half ago. I had full blood counts done on both just to check everything with them. Everything of Sis's came back fine and her thyroid levels are stable so she doesn't have to up her dosage. Her calcium has also continued to stay great. Everything for Big B came back fine except his thyroid levels. His calcium is looking good and we will start backing down on the Calcitrol for him to one daily for a week and then one every other day for two weeks when he will go back in for more bloodwork. If his calcium still looks good then we will stop the Calcitrol and go back in another three weeks to see if his parathyroid is working on it's own. Big B's thyroid meds needed to be increased yet again to 137mg daily. He is now on a higher dose than I am! I'm not sure if it has to do with the fact that he is so active or what. I really do need to research thyroid info so I will know what's going on.
Last Wednesday Big B, Sis, and myself all had an appointment with the dermatologist. I just had Big B's keloids in his neck scar checked and acne/skin checked just to make sure he was looking okay. He was given the option of having a steroid injection to smooth out the scar some which he decided he wanted to try. It looked painful but probably only pinched a little. He was also prescribed some creams for acne.
I had my keloids checked, my moles checked, and my acne as well. With the keloids it was the same option as Big B or I could get some silicone sheeting to wear on my neck 12-18 hours a day. I told him I wasn't too worried about how it looked right now. I just wanted to find out if scar tissue could be causing some of my pain. He said that no he didn't think so and I told him I would check into the injections after the pain thing was taken care of. My moles are noncancerous so that was pretty great. To finally have something on my body be NONcancerous! WOW! lol. I'm going to have some of them removed later on because they rub on my clothing and get caught sometimes. As for the acne, I was given creams as well.
Now, on to Sis. I had her keloids checked in her neck scar, the discolored itchy patch on her back, and the alapecia on her head. She was given the option of injections for the keloids and said no way so that was fine. I wasn't going to make her do anything she didn't want to. The dermatologist said he felt the patch on her back was a form of eczema and prescribed her a medicated tape that we have to apply to her back about once a day. So far it itches even more and drives her nuts. lol. The tender spot on her scalp where she had the alapecia he had to take samples from to check if a fungus might be causing the tenderness. We should get those results back in about a week. So everything was pretty mellow and easy.
That's basically it for now. I'm tired and beaten up from moving. I sweated too much and probably should have upped my steroids but didn't think to. If I feel sick in a few days then I will take care of it. For now I'm just too tired to care. :)
As I said, the pain specialist started me on a combined regimen of Zonegran and Cymbalta. After being on the Zonegran for almost a month and a half and the Cymbalta for 2 1/2 weeks I called him and let him know that they were doing nothing for my pain. When I say nothing I do mean nothing. I am in just as much pain now as I was almost three months ago. His only reply was that I hadn't been on the Cymbalta long enough and needed to stay on it. Then he refused to give me anything at all to help with the pain until the Cymbalta supposedly kicks in. :(
At this point, I'm not a good person to be around. After almost three months of nonstop pain I am grouchy, short tempered with Vin, and just don't want to do much of anything because moving hurts so much. So much for the Cymbalta helping the pain much less my mood. Junk!
The only thing that came from that phone call was me ending up crying and them moving my appointment up a week. Needless to say that on September 1st the pain specialist better be ready for me because I'm at the end of my patience meter. I swear if he pushes basically wanting me to have depression one more time I'm firing him and just going to the general practioner to start over on regular pain meds. If this pain is suppose to last 4-6 months then by the time I make my way through them all again the pain should finally be gone.
First it was I had to give the Zonegran time to take effect. That was three weeks almost a month with no results. Then it was well take the Zonegran AND this Cymbalta for the next six weeks. Two and half weeks into that... nothing. You would think I would at least be feeling SOMETHING by that point but no. Continue taking it and see you in 3 weeks he says. Jerk!
So anyway- I'm in pain, still have this "thing" in my forearm because I haven't been able to make it down to Tampa, and I've been feeling pretty sick lately. Another lovely new thing that has come up is the fact that everytime I sweat I itch. If I sweat on my neck it feels like someone has wrapped a piece of fiberglass around my neck. It itches so badly and I break out in a lovely red rash. My old neighbor said she had heard something like that before and it was an allergic reaction to the person's own sweat brought on chemically from a med they were on. I got to thinking and stopped taking the Zonegran for a few days. The first day after I stopped we were moving and I sweat and itched but only about half as badly with the same red rash. The second day I only itched about 1/4th as bad as usual and the rash was alot lighter. By the third day I only had slight itching and no rash or pain. I could be wrong but I do believe it started shortly after I started on the Zonegran. I plan on calling the doctor AGAIN tomorrow and letting them know. If they'll even listen.
The kids had bloodwork done about a week and a half ago. I had full blood counts done on both just to check everything with them. Everything of Sis's came back fine and her thyroid levels are stable so she doesn't have to up her dosage. Her calcium has also continued to stay great. Everything for Big B came back fine except his thyroid levels. His calcium is looking good and we will start backing down on the Calcitrol for him to one daily for a week and then one every other day for two weeks when he will go back in for more bloodwork. If his calcium still looks good then we will stop the Calcitrol and go back in another three weeks to see if his parathyroid is working on it's own. Big B's thyroid meds needed to be increased yet again to 137mg daily. He is now on a higher dose than I am! I'm not sure if it has to do with the fact that he is so active or what. I really do need to research thyroid info so I will know what's going on.
Last Wednesday Big B, Sis, and myself all had an appointment with the dermatologist. I just had Big B's keloids in his neck scar checked and acne/skin checked just to make sure he was looking okay. He was given the option of having a steroid injection to smooth out the scar some which he decided he wanted to try. It looked painful but probably only pinched a little. He was also prescribed some creams for acne.
I had my keloids checked, my moles checked, and my acne as well. With the keloids it was the same option as Big B or I could get some silicone sheeting to wear on my neck 12-18 hours a day. I told him I wasn't too worried about how it looked right now. I just wanted to find out if scar tissue could be causing some of my pain. He said that no he didn't think so and I told him I would check into the injections after the pain thing was taken care of. My moles are noncancerous so that was pretty great. To finally have something on my body be NONcancerous! WOW! lol. I'm going to have some of them removed later on because they rub on my clothing and get caught sometimes. As for the acne, I was given creams as well.
Now, on to Sis. I had her keloids checked in her neck scar, the discolored itchy patch on her back, and the alapecia on her head. She was given the option of injections for the keloids and said no way so that was fine. I wasn't going to make her do anything she didn't want to. The dermatologist said he felt the patch on her back was a form of eczema and prescribed her a medicated tape that we have to apply to her back about once a day. So far it itches even more and drives her nuts. lol. The tender spot on her scalp where she had the alapecia he had to take samples from to check if a fungus might be causing the tenderness. We should get those results back in about a week. So everything was pretty mellow and easy.
That's basically it for now. I'm tired and beaten up from moving. I sweated too much and probably should have upped my steroids but didn't think to. If I feel sick in a few days then I will take care of it. For now I'm just too tired to care. :)
Thursday, July 28, 2005
July 28 Pain Appointment
Just got back from my appointment with the pain doctor a little while ago. The short version is that it most likely is going to be ANOTHER month before I have any relief from the pain. That alone almost sent me into tears but then of course, it continued.
I told him that the Zonegran has done nothing for the pain thus far and all it does is leave me feeling groggy the next morning and with a headache. For twenty days I've had this stuff so you would think it would do something by now. At first he wanted to up the dosage but then he decided instead to put me on an anti-depressant that supposedly has shown to help with nerve pain/damage. So I was put on Cymbalta 30mg for two weeks and then 60mg and come back in 6 weeks. :(
He asked how my moods were lately and I told him honestly that I'm on the verge of tears most days because the pain just takes so much out of me. Of course, then I was given the schpeel about how depression can do this, this, and this and so on and told that the Cymbalta will help that as well.
Why in the hell can doctors NOT get that I do NOT have depression, I don't want depression, and I have no reason to feel I should have depression?! YES, I have been through alot and yes I know other people at this point might have depression but the ONLY thing that is bugging me right now is that I am in pain nonstop!! It's like they just can not comprehend that someone might actually be able to handle life and deal with a crappy hand they might be dealt. I'm sorry I'm not a wimpering ball of depressed muck so they can all have the joy of diagnosing me and putting me on MORE pills.
I have been through some really hard stuff in my life. Stuff that SHOULD have depressed me and tossed me into a pit but I'm stronger than that. BTW- anyone with depression please don't think I'm saying you are weak. I'm just talking about my feelings about myself personally. I'm all for it for other people. LOL. Anyway- I've been through plenty of other crap and never had depression nor did I take meds for it so just because I have cancer and have been through hell the last year I automatically SHOULD have depression and beg for meds?
Please, if I won't let cancer and genetic screw ups take me out do you really think I'm going to let something like depression have me? Sorry it's just not happening and I really wish doctors would accept that. Well I should say Dr L has accepted that because she doesn't even ask anymore. She knows that if I ever think I need something I will ask and I greatly appreciate that.
I do like this new pain doctor don't get me wrong. He is very kind, courteous, and trying to help me out. I just wish he would quit pushing this depression thing on me. Of course, now it's kind of taken care of isn't it thanks to taking the Cymbalta for pain (in combo with the Zonegran)? Oh well, maybe if nothing else it will work on the pain and make me a Stepford Wife for a couple months. LOL
He also explained that the reason he isn't giving me meds that work immediately is because he feels it will take about 4-6 months at least for me to not have problems with pain anymore and he really wants to help me with the long term rather than short term so that is why we are using the Zonegran and Cymbalta. I appreciate that even if it is hard right now while I'm hurting so bad. He also said that the Cymbalta is just to help during this 4-6 months and he in no way expects me to have to continue on it or use it for long term depression or anything. At least he's catching on. ;) I told him that works for me because I'd rather save the anti-depressants for people who actually have depression but again, if it makes me act like a Stepford Wife for a few months then we'll consider it an early Yule gift to Vin and the kids. LOL
Just got back from my appointment with the pain doctor a little while ago. The short version is that it most likely is going to be ANOTHER month before I have any relief from the pain. That alone almost sent me into tears but then of course, it continued.
I told him that the Zonegran has done nothing for the pain thus far and all it does is leave me feeling groggy the next morning and with a headache. For twenty days I've had this stuff so you would think it would do something by now. At first he wanted to up the dosage but then he decided instead to put me on an anti-depressant that supposedly has shown to help with nerve pain/damage. So I was put on Cymbalta 30mg for two weeks and then 60mg and come back in 6 weeks. :(
He asked how my moods were lately and I told him honestly that I'm on the verge of tears most days because the pain just takes so much out of me. Of course, then I was given the schpeel about how depression can do this, this, and this and so on and told that the Cymbalta will help that as well.
Why in the hell can doctors NOT get that I do NOT have depression, I don't want depression, and I have no reason to feel I should have depression?! YES, I have been through alot and yes I know other people at this point might have depression but the ONLY thing that is bugging me right now is that I am in pain nonstop!! It's like they just can not comprehend that someone might actually be able to handle life and deal with a crappy hand they might be dealt. I'm sorry I'm not a wimpering ball of depressed muck so they can all have the joy of diagnosing me and putting me on MORE pills.
I have been through some really hard stuff in my life. Stuff that SHOULD have depressed me and tossed me into a pit but I'm stronger than that. BTW- anyone with depression please don't think I'm saying you are weak. I'm just talking about my feelings about myself personally. I'm all for it for other people. LOL. Anyway- I've been through plenty of other crap and never had depression nor did I take meds for it so just because I have cancer and have been through hell the last year I automatically SHOULD have depression and beg for meds?
Please, if I won't let cancer and genetic screw ups take me out do you really think I'm going to let something like depression have me? Sorry it's just not happening and I really wish doctors would accept that. Well I should say Dr L has accepted that because she doesn't even ask anymore. She knows that if I ever think I need something I will ask and I greatly appreciate that.
I do like this new pain doctor don't get me wrong. He is very kind, courteous, and trying to help me out. I just wish he would quit pushing this depression thing on me. Of course, now it's kind of taken care of isn't it thanks to taking the Cymbalta for pain (in combo with the Zonegran)? Oh well, maybe if nothing else it will work on the pain and make me a Stepford Wife for a couple months. LOL
He also explained that the reason he isn't giving me meds that work immediately is because he feels it will take about 4-6 months at least for me to not have problems with pain anymore and he really wants to help me with the long term rather than short term so that is why we are using the Zonegran and Cymbalta. I appreciate that even if it is hard right now while I'm hurting so bad. He also said that the Cymbalta is just to help during this 4-6 months and he in no way expects me to have to continue on it or use it for long term depression or anything. At least he's catching on. ;) I told him that works for me because I'd rather save the anti-depressants for people who actually have depression but again, if it makes me act like a Stepford Wife for a few months then we'll consider it an early Yule gift to Vin and the kids. LOL
Saturday, July 23, 2005
Update From My Endo Appointment
Well first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to 88mcg of Synthroid and Big B up to 125mcg of Synthroid which by the way is what I'M taking! They were only slightly on the low side with the thyroid levels though so we will redo their bloodwork in about 4 weeks and see how they are doing again.
Last Thursday I found out that I only have one optic nerve in each eye. LOL. After what I had heard about some people with MEN2a having extra optic nerves I had wondered but nope that is at least one thing I am normal on. :) I did however need glasses and got to pick those up yesterday. I can't see worth a darn but the doctor says that is most likely because my eyes spent so long trying to compensate for my bad eyesight that now they are fighting the corrective lenses. So we'll give it some time and go from there. I'm sure I will adjust though.
On Tuesday I went to my appointment with Dr L. It was odd because I was in the room that she first told me the results of my biopsy in. As I sat there waiting for her I just kind of reflected on all that's gone on the last 9 1/2 months. Man, you never realize what a roller coaster ride it's been until you sit and think about it all. I will honestly say it brought tears to my eyes reliving the day she said the words "Your biopsy results came back abnormal for being abnormal" in my head. It's true what they say about your life changing in an instant.
Anyway- she noticed that I've gained weight and said that it is most likely the high dosage of Dexamethasone they had me on after the surgery. She also told me that it's not likely I will lose the weight which honestly almost sent me into a state of instant depression so deep I would have needed some REALLY REALLY good drugs to get back. :( I have gone from weighing 157lbs last September (which looked nice on my 6' tall frame) to now weighing 180lbs and 13lbs of that was gained in between June 2nd and June 11th.
I feel like everything has been taken from me and I know I shouldn't feel that way because I'm still alive, my children are still alive, and things could be so much worse but I can't help but feel cheated and angry. It's just the human side of me I suppose. I will never be considered pretty again as it is thanks to the scar on my neck and the scars on my stomach but now I have to live in this heavy body that isn't me. I feel like I'm trapped inside a bubble and I can't get out. I may end up needing those anti-depressants after all if this weight isn't going anywhere. Isn't it sad that I made it through cancer and everything else but may end up with depression over weight?
Back on track- so she went over the weight thing, we discussed my lab results, she told me that I can exercise just like anyone else and all I have to do is stay out of the heat, and she said I might want to cut back on carbs and up my proteins to help with the weight thing. She also gave me a sheet of paper to give the Emergency Room in case I ever have to go in again with adrenal crisis. It's to help insure we don't have problems like we did the last time. Supposedly all I have to do is give them that piece of paper and they will treat my adrenal insufficiency like they are suppose to. Here's hoping anyway eh?
I told her about the fiasco with the ped endo in Lake City and she said keeping track of the kids until we hopefully move in January shouldn't be a problem. I was so thankful and so relieved that she agreed. She's not a ped endo and doesn't have to do any of this so it's really wonderful of her to be willing to. No more searching for creepy endos for the kids. YAY!!
Now on to some of my lab results. My calcitonin levels pre-surgery were 16,660 (give or take) and as of my last blood draw my levels were 36. This is VERY good. We're hoping it drops more of course but as long as it doesn't start going back up again then we can hold out hope. My calcium level has stayed between 9.0 - 9.6 which is normal and good. It means my parathyroid is working fine as far as that goes. My thyroid panel came back as slightly hyPERthyroid so Dr L dropped my Synthroid from 125 to 112 which means my 14yo son is on a higher dose than I am. I don't get that but okay.
And now for the one bad result- my intact PTH which measures the parathyroid hormone in your system. Pre-surgery this level was around 92 which was elevated but not a HUGE deal. Now it is at 515 which is VERY bad. The doctors in Tampa seem to be scrambling and trying to backpeddle now. They are basically hoping that by removing the adenoma they put into my right forearm my PTH levels will go down to normal. If not then it means they screwed up and we may be looking at parathyroid cancer.
Keep your fingers crossed for me that removing this stupid thing in my arm fixes things because parathyroid cancer means chemo and rad therapy. Not something I'm looking forward to and it would really suck to make it through the other cancers just to end up at this same crossroad anyway.
I was suppose to go down to Tampa on Monday (July 25th) but they decided to schedule the procedure at 4pm which would put us getting back home around 11pm at night. That is just too hard on everyone so I cancelled and will be emailing Dr BC this weekend to see what kind of doctor I need to look for here to remove it and also what doctor I need to see around here for the tumor still left in my intestine. At this point I'm guessing they think it is benign so no reason for me to go back down there to that craphole again.
So that's it- those are the test results, we'll hopefully find someone to get this thing out of my arm, we'll move on to the tumor in my intestine, Synthroid level was dropped, the kids have blood draws in 4 weeks, I have a blood draw in 6 weeks, and we don't have to see her again until December.
Well first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to 88mcg of Synthroid and Big B up to 125mcg of Synthroid which by the way is what I'M taking! They were only slightly on the low side with the thyroid levels though so we will redo their bloodwork in about 4 weeks and see how they are doing again.
Last Thursday I found out that I only have one optic nerve in each eye. LOL. After what I had heard about some people with MEN2a having extra optic nerves I had wondered but nope that is at least one thing I am normal on. :) I did however need glasses and got to pick those up yesterday. I can't see worth a darn but the doctor says that is most likely because my eyes spent so long trying to compensate for my bad eyesight that now they are fighting the corrective lenses. So we'll give it some time and go from there. I'm sure I will adjust though.
On Tuesday I went to my appointment with Dr L. It was odd because I was in the room that she first told me the results of my biopsy in. As I sat there waiting for her I just kind of reflected on all that's gone on the last 9 1/2 months. Man, you never realize what a roller coaster ride it's been until you sit and think about it all. I will honestly say it brought tears to my eyes reliving the day she said the words "Your biopsy results came back abnormal for being abnormal" in my head. It's true what they say about your life changing in an instant.
Anyway- she noticed that I've gained weight and said that it is most likely the high dosage of Dexamethasone they had me on after the surgery. She also told me that it's not likely I will lose the weight which honestly almost sent me into a state of instant depression so deep I would have needed some REALLY REALLY good drugs to get back. :( I have gone from weighing 157lbs last September (which looked nice on my 6' tall frame) to now weighing 180lbs and 13lbs of that was gained in between June 2nd and June 11th.
I feel like everything has been taken from me and I know I shouldn't feel that way because I'm still alive, my children are still alive, and things could be so much worse but I can't help but feel cheated and angry. It's just the human side of me I suppose. I will never be considered pretty again as it is thanks to the scar on my neck and the scars on my stomach but now I have to live in this heavy body that isn't me. I feel like I'm trapped inside a bubble and I can't get out. I may end up needing those anti-depressants after all if this weight isn't going anywhere. Isn't it sad that I made it through cancer and everything else but may end up with depression over weight?
Back on track- so she went over the weight thing, we discussed my lab results, she told me that I can exercise just like anyone else and all I have to do is stay out of the heat, and she said I might want to cut back on carbs and up my proteins to help with the weight thing. She also gave me a sheet of paper to give the Emergency Room in case I ever have to go in again with adrenal crisis. It's to help insure we don't have problems like we did the last time. Supposedly all I have to do is give them that piece of paper and they will treat my adrenal insufficiency like they are suppose to. Here's hoping anyway eh?
I told her about the fiasco with the ped endo in Lake City and she said keeping track of the kids until we hopefully move in January shouldn't be a problem. I was so thankful and so relieved that she agreed. She's not a ped endo and doesn't have to do any of this so it's really wonderful of her to be willing to. No more searching for creepy endos for the kids. YAY!!
Now on to some of my lab results. My calcitonin levels pre-surgery were 16,660 (give or take) and as of my last blood draw my levels were 36. This is VERY good. We're hoping it drops more of course but as long as it doesn't start going back up again then we can hold out hope. My calcium level has stayed between 9.0 - 9.6 which is normal and good. It means my parathyroid is working fine as far as that goes. My thyroid panel came back as slightly hyPERthyroid so Dr L dropped my Synthroid from 125 to 112 which means my 14yo son is on a higher dose than I am. I don't get that but okay.
And now for the one bad result- my intact PTH which measures the parathyroid hormone in your system. Pre-surgery this level was around 92 which was elevated but not a HUGE deal. Now it is at 515 which is VERY bad. The doctors in Tampa seem to be scrambling and trying to backpeddle now. They are basically hoping that by removing the adenoma they put into my right forearm my PTH levels will go down to normal. If not then it means they screwed up and we may be looking at parathyroid cancer.
Keep your fingers crossed for me that removing this stupid thing in my arm fixes things because parathyroid cancer means chemo and rad therapy. Not something I'm looking forward to and it would really suck to make it through the other cancers just to end up at this same crossroad anyway.
I was suppose to go down to Tampa on Monday (July 25th) but they decided to schedule the procedure at 4pm which would put us getting back home around 11pm at night. That is just too hard on everyone so I cancelled and will be emailing Dr BC this weekend to see what kind of doctor I need to look for here to remove it and also what doctor I need to see around here for the tumor still left in my intestine. At this point I'm guessing they think it is benign so no reason for me to go back down there to that craphole again.
So that's it- those are the test results, we'll hopefully find someone to get this thing out of my arm, we'll move on to the tumor in my intestine, Synthroid level was dropped, the kids have blood draws in 4 weeks, I have a blood draw in 6 weeks, and we don't have to see her again until December.
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