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Title: Disaster Day... Post by Lizzie2 on Feb 23rd, 2006, 9:23pm This is terribly long - and in two parts - I'm sorry!! Complicated person lately... The fun just doesn't stop sometimes.... I've mentioned bits and pieces here about some of the medical problems I've had the past few weeks and also mentioned a bit more about them to a few people in private. Things aren't looking good. I have some symptoms that add up to some scary shit - the problem is....what. I've been sick for a few weeks now. Currently my white painted walls have better color than I do. I lost 5 pounds in the last 2 weeks or so. Have had some funky lab tests. More fatigued than usual. Nausea, vomiting, dehydration. Loss of appetite. Inability to eat more than like 5 bites of any given meal. Palpitations, shortness of breath, sweating. A rockhard lump on the side of my neck and a sore on my opposite ear that has not healed in 2 months. Just a lot of bad stuff...to name a bit of it... So last night I worked 11pm to 7am. I'd had a very low potassium reading the other day, and my family doc had prescribed a supplement for me. I took it at around 7:30am as I was on my way to some doctors appts. First was orthopedics for the back, and the appt was terrible. I didn't like the guy at all even though this was the 2nd time I've gone to him. Right now, I'm scheduled for this nerve block procedure in a few weeks, but I'm actually going to cancel it - may even quit PT for now. I just need to focus on a few other things that are jumping out in importance. After that, I had the complete opposite appt by going to GI. My GI doc is awesome. Have only been there once and it was a year ago. He read through an entire list of notes I'd jotted down - I wrote it down for myself to remember, but he had borrowed the list to write down my meds and asked if it was alright for him to just read through the rest of it. I said sure - less explaining on my part. I wasn't feeling well and kept getting these flushed/hot flash feelings. He asked me if I always get hives on my neck when I'm stressed out. I was like...hives?!?! What hives?!?! Sure enough...big ole welts all around my neck right at the v-neck of my scrub top and all over my neck. I thought...detergent? But no - more likely the new potassium pill! I had been having this heavy feeling in my chest and kept having those flashes. During the rest of the appt, he changed my reflux med, added a new med to take the place of some other supplement I was having to take, and set up a plan for what we'd do next - including the fact that I will probably need some upper GI and lower GI scans. But I have to go back in April, so we'll reevaluate then. :) I left the appt and went to my car. I thought I could just drive home and sleep off the hives. As I'm driving around the block at Jefferson, all the sudden I'm feeling my tongue get thick and it's getting much harder to breathe. My throat was getting tight annd things were starting to tingle. I made an emergency call to my mom and spoke w/ her school nurse who said to get to the ER. I called my family doc and let them know, too. It took 30 minutes to get around the hospital city block and then back into the parking garage because their valet parking was closed!! At this point, I was really having a hard time breathing. My heart felt like it was beating out of my chest... Got to the ER and they whisked me back pretty quickly. Got me in a wheelchair because I was so short of breath that I couldn't finish a sentence and my heart rate was 136. They sent labs and got an IV going plus some O2 via nasal cannula. I'm very allergic to benadryl, so I can't have it - instead they gave me zantac and solumedrol - even though I'm not supposed to have solumedrol because of the avascular necrosis. I figured if it's between saving my life from an allergic reaction and risking more AVN...well shit, I needed the steroids!! Things started to get better, but the heaviness remained in my chest. My blood pressure had gotten as high as 136/105 and my heart rate was still 100-130's. The ER doc was going to let me go and I expressed my concern over the heart rate and BP. He said we'd see after my 2nd bag of fluids went in because he wanted to see my heart rate come down some. In the meantime, my mom got there and I talked to lots of my friends who work in the ER. One of my best friends from nursing school works there and I was glad to see him. I ended up having to call out of work again tonight. I think I've lost $1000 this week for missing work without sick time... not to mention what kind of impact that could have... :( |
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Title: Re: Disaster Day... Post by Lizzie2 on Feb 23rd, 2006, 9:23pm Continued... As the late afternoon was going on, I was starting to feel the affects of having been awake for about 25 straight hours, not having any of my normal meds for about 12 hours, and not eating anything since 2am. There was a little 2 year old girl as a patient on the other side of the curtain who was singing the alphabet song. She was cute, but I was starting to lose it. All the sudden I got slammed with a cluster attack. I was crying because the pain was so bad. My heart rate was through the roof, and my mom kept trying to get me to stop crying because everything was getting worse. The nurse came in, asked me what was wrong, and went to get the doctor. The doctor came in and said he could release me but if he had to give me more meds for the pain, then I'd have to stay longer. I said I'd leave, but I was still worried about my heart rate and BP. He said the heart rate was better and that it was all from pain and anxiety - which I know is not true. I came off verapamil about 4 weeks ago, and I was taking it also for hypertension and tachycardia. Ever since I started getting really sick a few weeks ago, my heart rate has been very fast. I was mad at what the doc was saying - well rather more frustrated that I still wasn't getting answers. So I told him it was fine if I left - tears streaming down my face the entire time and my head raging. He just looked at me...barely said anything as he asked me to sign the patient information pages and the discharge instructions. I pulled off all my monitoring equipment myself (that's what nurses do when forced to be patients...!) and as I sat up to sign the papers, I felt my heart rate raging away. The nurse pulled the IV, and I left - still in tears. My mom came here (apt) with me afterwards. I'm going to my family doctor again tomorrow and really going to discuss the fact that we need to figure out just what is wrong. I can't keep treating disasters as they pop up. I know some of these symptoms are connected and I KNOW there is something more wrong than what we're seeing. I need someone who's going to be persistent in finding out what is wrong with me! I also got the name of a good internal med doc from my GI doctor - I'll call her tomorrow and set up an appt, most likely... Sorry this is so long. I'm actually kind of scared. Afraid that by the time they know what it is, I'm going to be on my way out the door. I spend all my days off in bed now and have no energy to get up or even eat anything. It's just that feeling that I KNOW something is wrong....I had heart palpitations and chest pain through the rest of tonight and it is ongoing - with shortness of breath - but I just can't figure it out. Hopefully someone will be able to help me because I can feel my body slipping away. I know I just am not going to be able to continue on this path much longer. My body just can't keep this pace without fixing whatever is so screwed up. Not to mention, I'm on the way to losing my job if I can't get it together and quit calling out sick. Once again - sorry this is so long - just had to get it off my chest... Hugz, Carrie/Lizzie2 |
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Title: Re: Disaster Day... Post by minnie on Feb 23rd, 2006, 9:45pm Sorry your getting it from all sides it seems.Wouldn't it be a dream come true if one doctor could deal with all the medical problems.I can't imagine trying to keep that many Dr.s straight and keeping the schedule you keep.Doing it with constant pain.I wish there was something I could do to help you.Just know I'm here and praying for a healthy painfree life for you.You certainally deserve a break. Minnie |
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Title: Re: Disaster Day... Post by Opus on Feb 23rd, 2006, 9:58pm (((((Carrie)))))), You are in my thoughts and prayers, you have come so far with such a huge load to carry. I will pray that your load gets lighter every second, and things start taking a turn for the better. Opus/Paul |
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Title: Re: Disaster Day... Post by Melissa on Feb 23rd, 2006, 10:07pm Glad you know it's not a severe anxiety disorder, because many of the things you describle are very similar. I really hope you can get some help from someone who will go the extra mile for you! I can't imagine what it'd feel like being in your shoes. I'd probably have to be committed!! ;) Stay strong hon... love, melly |
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Title: Re: Disaster Day... Post by Lizzie2 on Feb 23rd, 2006, 10:56pm Yeah it's not a severe anxiety disorder. I think it is anxiety producing, but anxiety isn't the root cause behind it all. I used to have panic attacks when I was in high school, but they went away when I moved out to State College and went to Penn State. I've only had a handful since then. Never pleasant, but I can tell. I always know when there's some deep anxiety bothering me, even if I can't place a finger on it. I've actually always had a rapid heart rate, and to an extent, it is a norm for me - however, the rapid heart rate has produced its own damage already. And it's known that you only get so many beats....I keep trying to tell my heart that it's not a race to the finish line... The first time I was hospitalized on a telemetry unit a few years ago, one of my favorite nurses, Dan, told me that I don't need to exercise - all I need to do is wake up in the morning and I reach my target heart rate. lol I've had an echo, holter monitor, and lots of other cardiac testing a couple of years ago because of the palpitations and intermittent chest pain. It's most likely a prinzmetal's (sp?) angina or something along those lines - also commonly associated with migraine. However, I may need to have a bubble or transesophageal echo done to look for a PFO to determine if this is the root cause of my problems....particularly the overwhelming fatigue. However, anxiety and depression play their own role. I have fought them for years...and I've come to recognize that it's a lifetime battle. Win some, lose some - but sometimes it's hard to forget during the deep depressions that the pain does end and good times do return. And I find that it's hard not to be depressed when, although I have a boyfriend and a kitten and some other great things in my life, it seems that I have 4-6 appts every week on top of my work schedule right now. It leaves little time for me to actually enjoy anything as I spend all my life at the hospital working or getting treatment myself. It is deeply depressing, and especially so in the past several weeks. So while I don't think anxiety or depression caused the symptoms I had today and have been experiencing lately - I don't doubt they come along with. I've had severe allergic reactions before with tongue swelling, and it was instant recognition as my tongue began to feel "thick" and I was having trouble with my speech. Fortunately, it didn't get as bad as the other times my tongue swelled and I wasn't able to speak clearly at all - but it was still a little scary!! Ah well...I can't believe I've been up for like 30 hours yet again - but I can't stop watching skating. One of the few things that's making me happy tonight. :) Hugz, Carrie :) |
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Title: Re: Disaster Day... Post by tanner on Feb 23rd, 2006, 10:57pm lizzie, my thoughts and prayers are with you tonight and it looks like it will be a long night.........tim |
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Title: Re: Disaster Day... Post by JenniferD on Feb 23rd, 2006, 11:05pm Carrie, listen to me........ you ARE going to calm down and not let fear take hold. You ARE going to stay strong and at peace. You can deal with this. You ARE our cluster angel here, and we believe that there is much for you to do; your body is NOT slipping away. Its just needing some adjustment. and we ARE here for you at all times, thru all things. You try to get some rest. k? Jen |
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Title: Re: Disaster Day... Post by alienspacebabe on Feb 23rd, 2006, 11:22pm [smiley=hug.gif] :'( |
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Title: Re: Disaster Day... Post by tanner on Feb 23rd, 2006, 11:37pm I've known your pain and felt your grief, I know right now, there seems no relief, but as time goes by as you know it will, the memories fade and the wounds heal. I know its hard to stand and fight, the dreams, no the nightmares that fill your night. but don't give in as many do, hold fast your ground and see it through. For at the end when the battles won, when the pain is gone and the war is done. When the dreams come, only now and again, you'll find pride in yourself for you fought to win. If I can right just one human wrong, if I can help to make just one person strong, if I cheer with a smile or a song, Please Lord, show me how. author unknown........tim |
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Title: Re: Disaster Day... Post by cootie on Feb 23rd, 2006, 11:51pm I went thru some shit just before the holidays like that......course I hate the holidays....toooo much expected of us at this end. Anyhow.......ya can have panic attacks and not know why and they can really mess with ya. I had em for 2 months so bad that I didn't know what to do with myself. I didn't really know what hit me......it jus got worse and worse with more stuff added and then the back gets worse....and migraines got worse from my neck and hadn't had them consistant like that before ! NOT sayin that that IS yer problem but it amazed me how it made me feel........seem'd my heart was turned up to high and I couldn't sleep (not that I can now) at all and lost my appitite and had this aweful hot flash rages. And I was exhausted. Didn't seem like sumthin as simple as panic attacks would cause all that cuz if so it was one big long 2 month one !! Hope yer gonna be ok and you can sumhow reduce some of yer pain and stress. Course now that I found out our doctor is quitting along with alot of other stuff that has went wrong I figure I'll get it all back. Panic'y Pam I also am the HIVE queen.......... |
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Title: Re: Disaster Day... Post by zwibbs/Scott on Feb 24th, 2006, 12:43am Hi Carrie---you are more brave than me, as watching the woman's figure skating makes me a nervous wreck!!!------Alot of the symptoms that you stated that you were experiencing happened to my wife years ago, and they finally ( after about 20 doctor appointments) took her blood and sent it to a special lab in California where they returned with a conclusion of ( spellchec )Hemocromotosis---------her system was producing too much iron and it builds up in your liver, and very strongly affects your heart. The only way that she can relieve it is by blood-letting every month. It may be a long shot, but what the heck............just feel better, and stay strong . It takes a special person to do what you do. |
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Title: Re: Disaster Day... Post by FramCire on Feb 24th, 2006, 1:05am Oh Carrie.... I feel so bad for you. I can relate in some ways but obviously not to that extent. I have had multiple medical problems that took months to diagnose properly. The good news is that I got through all of them. Patience is impossible, but I pray for you the stregnth to get through it and the wisdom of your next few physicians to figure out how to treat you correctly. I know the end of the tunnel is out of sight, but it may be just around the bend. It only takes 1 doctor to call for 1 test sometimes to figure it out. |
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Title: Re: Disaster Day... Post by LeLimey on Feb 24th, 2006, 8:09am I agree with Framcire, that "one test" whatever it may be will give all the answers, you've just got to keep plugging away. Be brave Carrie, you know you've got all of us right behind you egging you on even if we can't be with you lots of love Helen |
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Title: Re: Disaster Day... Post by Lizzie2 on Feb 24th, 2006, 1:04pm Thanks for the messages....it means a lot. Went to my family doc. In the end, he asked me if I could just name one problem that was the biggest one to look at right now - what's hurting the most, what feels the worst - what would it be. But I don't have a good answer for that because it's just so many things... He put me on the 24 hour holter monitor because I said my heart rate had been so high lately. He said in the appt it was totally fine and my blood pressure was normal. For now. Today. He prescribed 25mg of atenolol for the heart rate, but I don't know if I'm going to take it or not.... Still have to think about all this. I guess I should make an appt with the new internal med doc - but for the weekend I think I'm just going to think about all this. I'm very tired and just need to get more than the 5 hours of sleep I've had in over 2 days. Cried in the appt yet again - mostly from frustration I guess.... I'm just tired of feeling badly and want answers...same as anybody would. Hopefully someday soon... Hugz, Carrie |
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Title: Re: Disaster Day... Post by sandie99 on Feb 24th, 2006, 1:16pm Carrie, I'm so sorry... [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] I hope that there will be more of those wonderful, happy moments in your life. :) You're in my prayers as always. All those difficulties shall pass. And I hope that it will happen very soon. Wishing great things your way, Sanna |
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Title: Re: Disaster Day... Post by ArCane on Feb 24th, 2006, 1:32pm So sorry Carrie. I couldnt imagin going through all of that. You are one tough cookie. My thoughts and prayers are with you. [smiley=hug.gif] [smiley=hug.gif] Allen |
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Title: Re: Disaster Day... Post by floridian on Feb 24th, 2006, 2:37pm Fast heartbeat, anxiety, high blood pressure, cluster headache - they are all linked to your hypothalamus. And maybe all quelled by GABA or benzodiazepines? Quote:
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Title: Re: Disaster Day... Post by carriefu on Feb 24th, 2006, 2:50pm im so sorry for your day, im a nurse also, for some reason our field is the least sympathetic to our headaches, today in the mail i recieved a certified letter explaining to me why they can no longer keep my job, unfortunately, ive had to fight the power before,(it never ends), this particular set of clusters is lasting and hard hitting....how is your b/p now?? |
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Title: Re: Disaster Day... Post by Dragnlance on Feb 24th, 2006, 6:46pm Carrie, [smiley=hug.gif] You may not feel very brave right now, but you are. With so many things happening at one time, how can one not get flustered and frustrated? Prayers forth coming from Montana, just for you. Keep plugging. It is all we can do. Dont give in, not ever. We need you here, and we are here for you. Lance |
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Title: Re: Disaster Day... Post by Charlie on Feb 24th, 2006, 11:20pm Rats Wish I had a magic bullet for whatever is eating you. I'm just glad you can post here. I'm pretty sure your letting off steam is good for ya. Don't let any of those medical types off the hook until you are satisfied. http://www.netsync.net/users/charlies/gifs/read paper Hang tough kid. Charlie |
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Title: Re: Disaster Day... Post by KMT on Feb 25th, 2006, 12:02pm :(Carrie Aww sweetie it looks like you are going through a lot right now. To be a wonderful woman blessed into this world to help others above yourself there has to be relief in all this for you sweetie. Not to mention your a fellow CHer that in itself makes you strong. Stay strong hon I am keeping you in my thoughts and prayers. [smiley=hug.gif] Kim |
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Title: Re: Disaster Day... Post by Lizzie2 on Mar 2nd, 2006, 5:55pm Updates... Well I just got the results of my holter monitor. I had 58 minutes of tachycardia over 24 hours and at times when I pushed the "event" button on the monitor because I was feeling a rapid heart rate. The person who called from my family doctor's offiice asked me how I was doing on the atenolol they had prescribed, but I never actually started it. So I may do that. My heart rate was good today at the neuro's office, and I had been reluctant to start the atenolol because I was already so damn tired all the time! Got a note from the neuro NP today to give my boss requesting that I work day/evening shifts instead of rotating day/night. I'm nervous about talking to my boss because I'm afraid she's going to say "that's what you signed on for" but the note does explain multiple reasons why I should not be working night shift. Doesn't she have to go by this for legal reasons? I don't know enough about it really... Some of the GI meds are just starting to kick in, so that's a good thing. I still got sick before work on Tuesday morning and the nausea/vomiting seems to persist, but now I've ruled out at least one cause of it. Also, I was infuriated last Wednesday after going to the orthopedic doc, but my PT has really worked with me quite a lot this week, and we've found the cause of my low back pain. It's something called SI Joint Syndrome. I'm going to be getting an injection in the SI joint in the next couple of weeks which serves as both diagnostic and also to treat that severe pain. I have this SI belt thing I have to wear which constantly slides out of place, but it does seem to help when I have it on correctly!! The PT spent about 2.5 hours with me on Monday, and I think it was worth it - he knew I was fed up with the doctor and upset about still being in a lot of pain, so he went at the appt with the feeling of, "we're going to find out what this is, no matter how long it takes." :) My constant migraine has improved by quite a lot since we changed my meds up. Some of the GI problems may be side effect related, but on the whole, my head is so much better. Still getting about 3 clusters a day, but I can face them so much easier now that the migraine pain has lessened a little bit. What was happening before was that when the CH hit ended, the migraine pain remained in the 8-9 level, so I was constantly wiped out. But now the migraine averages about a 5 or 6, and I can actually THINK a good bit of the time now! :) Still a long road to go, and there's lots more appts, tests, therapy ahead - but at least I've made a little progress on a few things. :) Just gotta keep on keepin on.... Thanks for all the support you guys have given me. I couldn't have done it otherwise. :) Carrie :) |
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Title: Re: Disaster Day... Post by sandie99 on Mar 3rd, 2006, 4:26am Carrie, I'm so happy to hear that there has been some progress! :) I know that it's a long way ahead of you, but don't worry. You've got lots of friends right here to support you each step of the way. And remember: venting is allowed 24/7 between friends!!!!! [smiley=hug.gif] All the best, Sanna P.S. Vibes & prayers are coming to your way. :) |
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Title: Re: Disaster Day... Post by Dragnlance on Mar 3rd, 2006, 2:14pm Carrie!!! Overall, that is great news! Any progress is good news! Pls keep us posted Good luck wishes headed your way! Lance |
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