Update and coming up visit

The scan of my heart shows that the sarcoidosis is not there! This is good news though it doesn't explain the SVT in April or the chest pain. I was told to find a pain management doctor. I have a lead on one but have yet to call for an appointment.
My brain MRI is scheduled for after my appointment with the doctor. I have been trying to get it done here but so far Rose Radiology has not been very good about calling me back for an appointment.

Back from my latest visit with some good news

The scan of my heart was my first stop at the Cleveland Clinic this morning. It was an hour of freezing cold in a noisy machine. The first IV site for the contrast didn't work. The nurse was good though. It didn't really hurt going in and as soon as she noted that it wasn't good she pulled it and went to the other arm with no problems. They are completely professional there and before my appointment, my MyChart notified me that I was to not have jewelry, zippers or my insulin pump. Thus the freezing. I went in a plain T-shirt, yoga pants and my fast flats.
After my hour in the machine we headed to Dunkin for some food and caffeine. Made it back with plenty of time for my cardiology appointment.
I really liked this doctor. My questions were answered in detail and my concerns addressed. He explained the differences in the type of arrhythmia that I have been having and the type that happens with cardiac sarcoidosis. He listened to my fears and my concern about how my arrhythmia showed up at the same time that I was being diagnosed with this disease.
The results of the scan didn't come in until after I left today. I read the report though. It looks promising.
Rheumatology was my last appointment. The doctor was intelligent but I felt like I was having to pry answers from him. He basically said that I need to see a neurologist. He did schedule the MRI for my brain. I have to figure out scheduling for that.
So, those are the fun details from this trip. Time for bed now. I'm hurting and have a massive headache.

Back for another visit

Tomorrow is the MRI of my heart. I don't know if the results will be ready by the time I see my new cardiologist but I certainly hope so. It would be nice to have an answer before I leave. I am not looking forward to the scan. The last one was an hour. I'm just hoping to finally have an answer as to why the SVT is back and why I keep feeling like something is wrong with my heart.
I have an appointment with the rheumatologist last. This will be my first visit to this specialty. I'm a little afraid of this visit. I know this is the doctor to help the most with the pain but the medications involved scare me. The idea that he may want to suppress my immune system really scares me.
I'm getting ahead of myself though.
Robert is here with me to keep me going strong and to remind me to take care of myself. I'll keep praying for answers and healing. It is comforting in a way but hard to do at times. I trust in Robert and I trust in God but I think that fear of the unknown is just natural.

Thought it was going to be a good day

So the results of the stomach emptying test I'd that its a little slow but normal. Back to trying to find out what makes me feel full all of the time and sick to my stomach.
I woke up with some pain today so I took a pain killer to get me through shopping and chores. I actually was feeling pretty normal.
The... while cooking I started feeling strange and a little dizzy. My face felt hot and I felt like my heart was in my throat. I checked my sugar but it was find. I tried my finger pulse thing but I guess I missed the event. My pulse was in the mid 80's.
I have one week to get through until I see my new cardiologist at Cleveland Clinic. Just one week. I think that I can make it.

Testing tomorrow

Tomorrow I go to USF for a test on my stomach. I have not been able to get an appointment with the gastro doctor at Cleveland Clinic for a day when I have others so I'm doing it here. The pain when I eat has become a serious issue and I just can't continue to wait.
I just want all of this over. It hurts. I feel like every time I get a little better, something else happens. It just never ends. I'm just so tired of being sick.

Crying won't help but sometimes...

I know crying doesn't help but sometimes you just have to. I know asking won't give me answers, but why me?
Eating hurts. It doesn't matter if it is just applesauce or yogurt. My stomach literally hurts. It isn't just nausea or gas. It hurts. My whole abdomen gets rock hard. Sometimes I get gas. Sometimes I vomit. But not until after the pain. I've tried eating slower but most of the time I eat so little that I don't know that it makes any difference.
I'm having another one of those weekends stuck at home. I honestly feel as if leaving my apartment would be dangerous. I'm dealing with the stomach pain, pain in the rest of my body, the headache, the dizzy spells and the overall feeling of just being sick.
I hate this. Why me? I know it doesn't do any good to ask but I can't help it.

Latest update from July visit

I had to get some paperwork completed for work so I got to see my pulmonary specialist again. It was actually a necessary trip since I have been having more problems breathing and have been coughing up stuff over the last few weeks.
The stuff that I am coughing up is not coming from my lungs. My doctor said that I sound clear. I'll have to see an ENT but I can do that here.
I had/have appointments in August with the new cardiologist, rheumatologist, and neurologist. When I got home I found a letter saying my cardiology appointment had been rescheduled. So now I have to work on rescheduling everything since I can't afford to stay down there three days.
My pain level has been off the chart today. I was so close to breaking down and crying several times at work today. I know I am having to use the heavy painkillers more often than I want because they no longer make me goofy or hyper.
I need something to change and change soon. I really don't know how much longer I can continue like this.

Update 6/5/14

It has been a while and a lot has happened.

The oncologist that I saw in January was the breast cancer specialist. In other words, the wrong doctor. I finally got in to see another oncologist and a pulmonary specialist. Both were amazing doctors. The oncologist agreed with the sarcoidosis diagnosis. She suggested a bone marrow biopsy but was pretty certain that it is most likely there. The pulmonary specialist blew me away though. Scans of my chest showed the extra lymph nodes every where including my lungs.
I am now working on seeing a few more doctors, including a neurologist. I have been having strange sharp pains, burning in my ears, headaches, and dizzy spells.
I am also going to see the cardiologist again. My SVT is back. It got me an ambulance ride from work.
Hoping for answers and to feel normal soon.

Back to the Cleveland Clinic

I'm back down South in Weston, FL. I have my appointment with the oncologist tomorrow. I'm really stressed out. I'm exhausted from the ride down. My pain has kicked in double time. I'm nauseas and my head is pounding. I just want answers. I want the pain to stop. I want the feeling sick to go away.

Update 1/9/2014 Same old stuff

I had major chest, shoulder and arm pain last night. It made me nervous about driving home but I made it. The pain just seems to be getting worse. I'm tempted to ask my doctor for something to help control it but I'm afraid of just masking the symptoms. 

Today has brought more pain though not as intense. Heartburn medication does nothing for it. I'm 100% certain that it is not from my digestive tract.

Two more weeks until my appointment with the oncologist at the Cleveland Clinic. I just keep telling myself that I can make it until then.

Happy Saturday I think not

Back to being sick. I have been dealing with a sore throat for a few days. Mild fever, but not bad. My head is pounding though. It is actually pretty bad right now. The nausea has not gone away. I have no appetite and have been forcing myself to eat. I am still having low sugars because of it. My arm is a horrible pain right now and my chest is hurting.
I am feeling down. I wouldn't call it depressed, just down. I feel like this will never get better. I just want the pain to stop. I could deal with the nausea if I didn't have so much pain.
I am not looking forward to my next appointment but at the same time I am. I just want answers that will finally lead to a treatment or solution.

I just want to get better

So here I am on Monday night. The chest pain, arm and shoulder pain...same old same old. Some of the pains in my chest would have sent me to the emergency room if I hadn't already known that my heart is not the problem.
I have been very sick to my stomach for three days now. I am back to the diarrhea and vomiting. I have just about no appetite until I am absolutely starving and even then I have trouble eating.
I am so very tired of all of this. I just want to get better. I want to have a normal life.

A little late but here is an update

My visit to the Cleveland Clinic was an amazing experience. I have never been to such a professional and well organized medical facility.
My primary internal medicine doctor is located in an office building across the street from the main clinic and hospital. She actually listened to what had already been done and what my concerns were. Based off of the information I provided, she decided that a trip to the cardiologist was the most important appointment. She also decided that a visit to oncology was also important because she did not like the lack of detail in my reports from my oncologist visits in Tampa.
I was a little disappointed in the amount of time it took for getting into the schedules but it was not too bad since I was using my vacation time and the extra rest was probably good for me.
I met the cardiologist, who specializes in a concentration of diabetics with cardiac disease. He jumped right on my concerns that I had about something still being wrong with my heart and the possibility that it had been damaged during my two procedures. He ordered a CAT of my heart which required that my heart rate be lowered. I can honestly say that was scary. I also never, EVER, want to have to take a nitro pill again. They used that to open all of my arteries for the scan. The scan came back showing no thickening of the walls, no plaque build up, and no damaged areas. He felt confidant that my heart is not behind the pain.
Unfortunately, the scan did come back with a report that I have something in my right breast. The most concerning part of the report is that I apparently have "innumerable" lymph nodes.
So, I am scheduled to see the oncologist on January 23rd. I do not plan on staying down there over night unless they want to do testing that can be done the next day. I can't afford another hotel bill like the first one on top of my deductible and copays.

So, there is the short version of my first visit.

I am still experiencing chest and arm pain. I am not freaking out over it as much now. I am still having my weak/dizzy spells, though they have not been too bad over the past week. I have, unfortunately been very sick to my stomach over the last couple of days. I'm taking the heartburn medicine but it hasn't helped with the other problems. I finally caved in and bought something to stop my having to run for the bathroom. Sadly, this seems to have made the nausea worse.
I am coping as best that I can. I am hoping to have some answers by the end of January as to what it IS and not just what it isn't.

Video update from 12/9/13

Am I ready?

I think I have everything packed. Just need to load it into the car in the morning and fill up the tank.

I've had my usual bouts of pain and stomach problems. Right now I am having sharp pains behind and below the left breast. It isn't heartburn. I took my pill earlier. This feels different from any heartburn that I have ever had. Nausea has set in, back and shoulder pain. I just want some rest. 

Hoping Tuesday brings some good ideas and plans. 

Excited but nervous

Tuesday is my appointment! I'm getting kind of nervous. I don't want to be told again that they can't find anything wrong and sent on my way without them looking at what else could be making me so sick.

The last few days have sucked. The pain has come and gone. The worst part is the not being able to sleep. I keep feeling like something is wrong. I'm always afraid that I won't wake up.

Today was pretty bad. Not only did I have pain in my chest but my shoulder and arm were pretty bad too. And of course there was the nasty headache. And then the upset stomach. The stomach issues are still lingering. I'm just trying to cope with it as best I can. And now it is not just an "upset" tummy. The vomiting has started. I'm hoping it is just one of those things and not a stomach bug or like it was last year with the six weeks of being sick.

I am flat out exhausted. I'm trying to make sure everything is ready at work for me being gone.

Another one of those nights

Last night was another one of those nights where I had trouble sleeping. I kept feeling like something was wrong with my heart. It felt like it wasn't pumping right. I know that may seem silly but it is the only way I can describe it.

I had pain through my left side again around the lower ribs and under my arm.

It was one of those days again where nothing agreed with my stomach. I felt sick every time I thought about eating and when I did eat my stomach got upset. 

I am making more of an effort to control my sugar. I know it could be adding to my health problems. It is hard to eat healthy all of the time and I honestly want to binge on chips and chocolate because I am getting so frustrated with my overall health. I know that will just make it worse though so I am making an effort to ignore those urges. 

One week to go

I have one more week to get through before my visit to Cleveland Clinic in Weston, FL. I'm excited and scared at the same time. I don't like being poked with needles and all that but if that is what it takes, I will do it. I'm scared that they may try to just give me some medication without fully getting to the bottom of my health problems and then expect me to just come back after a month or so. I can't do that kind of stuff anymore. I will not just take some medication to see if it makes things better. I want to know what is actually wrong. Why I keep getting dizzy, feeling weak and all the rest.

Happy Thanksgiving

Happy Thanksgiving! My sweet boyfriend drove down from Georgia yesterday. It is so good to see him and I love being able to snuggle with him.

I felt sick and almost like I was going to pass out while I was peeling potatoes today. I hate not being able to help.

Edit: We got our hotel room for some privacy for the weekend. I'm still feeling pretty bad. The pain comes and goes in waves. My chest, shoulder and arm are hurting still. My left leg keeps hurting in the thigh muscle. The headache that I woke up with had eased a little but has come back full force. Sadly, my stomach has also been upset. I'm trying to eat small meals more often but my body just isn't liking it.

I often feel like my problems are related to circulation. Hopefully I will have the answers soon.

First time for everything I guess

The last two days have been painful. It was pretty much the usual pain in the usual places except for a really, really sharp pain in my left side just below my ribs. I often feel like something is going into a spasm there, but this is pain. Nothing seems to help.

Today was the first time that I have woken up with the really bad pains. I usually wake up with some minor aches but this was like the full blown pain. Again, nothing seems to help. It is still with me after two hours. It feels like it maybe easing a little... Or maybe I am just getting used to it.