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.

Official appointment date!

I have my appointment date with the Cleveland Clinic in Weston, FL set for December 10, 2013! I would go next week if I thought I could find coverage at work that fast. I may still try to rearrange for next week if I have another day like today.

I took my heartburn pill this morning like a god girl. Problem is, it doesn't help the chest pain. I'm about 99% certain that my chest pain is not acid reflux/GERD.
The pain hit really bad this afternoon. My whole chest was hurting but the worst pain was, again, just left of the breastbone and left side. I had a new place for pain too. I often feel like my stomach or something is having a spasm just below my ribs on the left side. Well, today it was pain. Excruciating pain. It took my breath away. All I could do was sit at my desk and hold that area. I felt dizzy at the same time.

I am feeling exhausted and just want to crawl into bed.

Had that "blah" feeling all day

I managed to drag myself out of bed for physical therapy this morning. I did not want to get up but I have this thing about making appointments that I schedule. I will generally not miss an appointment for anything unless something happens that totally prevents me from going. Like being in the hospital or car problems.
PT seems to help with the stiffness in my shoulder and neck and even helps with the pain... for a little while. The pain is always there but I think that it is helping to loosen up my muscles that are always so tight from my constant feeling sick and chest pain. The stress of trying to deal with every day being filled with pain is making me tighten up and knotting up all of my muscles. The PT helps relax the muscles for a day or two at least. My arm and shoulder still hurt but not as much.

I went to work for a couple of hours to get a truck out then headed to the grocery store to pick up stuff for Thanksgiving dinner at my sister's. She is letting me use her kitchen so I am buying the food and cooking. I was amazed that it wasn't packed in there.
I was so completely exhausted after the grocery store trip. I got to my sister's with the food and had to have her help carry it in. I had no strength left. My sugar was fine but I felt weak. Kind of like I was going to pass out. I sat for a little while and then headed home to rest.

I have felt pretty bad since I got home. I had one of my episodes of feeling like I was having a SVT and the waves of sharp, stabbing pain in my chest. I felt dizzy/light headed. I have had no appetite today. I have had to force myself to eat just the three meals that I have eaten and I wouldn't really call them "meals". My left arm has been hurting since the chest pain started and it is making it difficult to do anything. I took some heartburn medicine, just in case I was mistaken about what was causing the pain. It hasn't helped at all with the pain. I took some aspirin. It seems to have helped a little but I think it is wearing off now.

The fact that I can't do something as simple as going to the grocery store without being absolutely exhausted from it is so very frustrating. I want to do things. My brain tells me to go wash my car, do laundry, go shopping. I just can't do it.
I generally drag my laundry basket to the washer. Thankfully I can rest while waiting for the washer and dryer.
Washing my car is just about impossible now. I tried. I honestly did. It costs $1.75 to use the car wash bay down the street. I think that gives you 4 minutes. I end up spraying my car down, putting in more quarters, resting, brushing half of the car, putting in more quarters, resting, brushing the rest of the car, putting in more quarters, resting, then rinsing the car. I usually end up sitting in the car for a few minutes before I can pull out. I think that this last time I ended up putting in $5 worth of quarters. I hate using automatic car washes because they don't get the car clean and usually leave a film on it but I don't have the strength to really scrub it anyway.
I get in and out of stores as quickly as I can. I usually end up having to support myself on the cart by the time I get to the cashier, even if I was only in there 15 minutes and have 4 items. If I need to go to multiple stores I have to go to one, go home and rest, then go to the next one. Sometimes I push myself to go to two in a row but I usually end up so exhausted that I sleep the rest of the day.

Last night was a rough night. The pain in my chest just would not go away. I know it was close to 1 AM by the time I finally passed out. I am so afraid that I won't wake up in the morning. The feeling that something is wrong in my chest is beyond scary.

I really need answers for all of these problems. I just don't know how much longer I can keep sane.

My first kholrabi experience

I know, some of you are most likely looking at that title and going "Eh?"!

One of the guys at work was telling me about this super duper vegetable and brought me a couple of them. It is apparently good for fighting diseases such as cancer. Nutrition-wise it is packed with vitamins, low in calories and high in fiber. It comes from the cabbage family.
Here is a picture of one of the cute little guys:

There are a number of recipes online but my friend that I live with decided to keep it simple. She peeled off the outer green skin until the white "meat" inside was all that was left. She then chopped it into 1/4 slices, coated them in olive oil, salt, pepper, and garlic. I'm not sure what temperature she had the oven on but cooked them for about 15 minutes, flipping them so that they would brown.

The consistency was like that of an apple slice. The flavor was very much like a potato and it even looked like potato slices.

I am still waiting to see what kind of effect it has on my sugar but so far so good. No spike and it does not seem to be causing a delayed spike.

All in all, I am impressed with it and would eat it again. I have never seen it in the grocery store, but I have never actually looked for it. I'm sure that the health food stores and natural food stores will have it.

Finally Friday

Friday is finally here. Unfortunately I have to work tomorrow for a couple of hours. 

The headache has finally eased off a little bit. It is still there but not as bad. My chest was hurting pretty bad this afternoon. All of the pain was behind my left breast and down my left side. My left arm is hurting now and again, the skin is cold to touch. The sides of my neck feel tight, almost as if someone is choking me.

I took some aspirin earlier today which may have helped the headache but did not seem to effect the rest of the pain. I also tried Zantac but I'm just about positive that this pain is not heartburn, unlike what a couple of doctors tried to tell me.

On the plus side, I have not felt nauseous at all today.

I never got a chance to call the Cleveland Clinic today because we were so busy at work. I will try to call tomorrow but I don't think that the appointment line is open on Saturday. If I can't get through tomorrow I will definitely be making the time to call on Monday.

Last night I felt almost like I was having a SVT right before bed. My pulse appeared normal though by the time I got my blood pressure monitor on. I felt like another one happened today but I only carry my little finger pulse ox with me to work and it isn't the most reliable way to check. It did read 102 but that may have been from my getting up from my desk to dig in my purse for the finger doodad.

Physical therapy tomorrow morning before work. Hopefully it helps with the headache. It seems to have loosened my neck and shoulder but I can't really say that it is helping with the pain since it comes and goes.

Is the day over yet?

Still at work for inventory. Hopefully leaving soon.

Had some pain today on left side of my chest again but the worst was the shooting pains in my side below my arm. It comes in waves and has been happening off and on for a couple of hours now.

My headache from yesterday is still holding on. Nothing seems to be helping it right now. Maybe it will be gone tomorrow.

I got a message from the Cleveland Clinic today. The message said I need to request an appointment for a full physical. I plan on calling tomorrow to see what kind of schedule they have. I want to get in this year if possible.

Edit: so here is some weirdness, the area of my arm that starts hurting with my shoulder is cold. The skin is cold to touch. Strange things with my body...

Pain, pain, go away...

I was feeling pretty tired this morning when I was finally able to drag myself out of bed. My day started off with a headache that is still lingering. My eye has been twitching too.
My chest, left shoulder and arm were hurting a lot today in the late afternoon. The shoulder and arm pain could have been my neck, could have been whatever is making me feel sick. The arm pain came and went pretty much all afternoon. My arms felt weak and I had trouble driving home tonight. The pain is still there right now, just not as bad.
I've had nausea all day as well. I know that certainly wasn't helping my feeling so run down. Around 3 PM today I just felt like I could curl up in a ball and go to sleep because I was so exhausted.

I am waiting for a response from the Cleveland Clinic. I expect that I will hear from them tomorrow. I'm hoping for the best and that I can get in this year. I filled out my FMLA and STD papers for work today and sent them to my doctor to complete.

Thats about it for today. I'm drinking my water and planning on heading to bed soon.

My appointments for today

I had three doctor appointments and an MRI today.

My first visit was the electrophysiologist that performed my two EP studies with ablation. This was just a followup appointment since the second procedure. He asked me some general questions about how I was feeling and if I had had any more SVT episodes. I told him that I have not detected a rapid pulse since the second procedure but that I am experiencing chest pain. He reviewed the stress test information and went over my last monitor results again. He said he does not believe that the pain is related to my heart at this time.

My second appointment was in the same building to visit the ob/gyn regarding my abnormal cycles. We went ahead with a PAP since I was due anyway. He told me that my cycles are most likely due to a hormonal imbalance. I have not been on any birth control for about two years due to my diabetes and other health problems so he suggested that I have a IUD inserted. It will not release estrogen into my system and would have less side effects on my current health problems.
Though I am nervous about these things due to the possibility of it migrating, it appears to be the best option unless I want to buy stock in Kotex.
We went ahead and requested it through my health insurance. When it arrives I will discuss my concerns with him regarding the research that I found tonight. Obviously I have to take reviews into consideration but I can't let only bad reviews make my decision.

My third appointment was with my endocrinologist. He was not happy that my A1c did not go down more but he understands that I am having problems with my health that are effecting my sugars. Pain makes my sugar spike. I am compensating as needed with my insulin pump. He thinks that my idea of going to the Cleveland Clinic is a good one.
My kidney function and the rest of my labs were all good, so there is no indication that any of my constant feeling ill has any relation to my diabetes...again.
I really need to work on my diet. I drop suddenly in the afternoons and it is showing because I over-correct for it. I really need to find better options of snacks and lunches that I can carry with me. Frozen dinners are just getting BLAH.

The MRI was performed on my shoulder today. I was having shoulder and arm pain that was causing confusion as to whether it was my heart or just my shoulder and arm. After two visits for physical therapy I can say that it is just my neck, shoulder, and arm. My neck appears to be where the pain is originating but there is also something going on in the shoulder as well.
The MRI was planned without and with contrast but after talking to the technician it was decided to do it only without. Apparently diabetics have issues processing the dye out. I know that when I had my MRI of my heart earlier this year, I got very sick. For two days I was vomiting because my body just couldn't process the dye fast enough, no matter how much water I was drinking.
Even without the contrast I am feeling a little ill. Maybe it is just from the stress of the whole deciding on the contrast thing but I am suffering from a bad headache and feeling a little sick to my stomach.

I heard from the Cleveland Clinic today regarding a message I had sent. They gave me some information regarding the Weston, FL location that treats sarcoidosis.
I sent a request back to them because I'm not sure what doctor I need to see. I need to know if the sarcoidosis is limited to my lymph nodes or not. I need to know if it is in my heart. If it isn't in my heart, what is causing the chest pain.
So, hopefully I will hear back from them within the next couple of days.

Oh.. forgot to add that I have apparently lost more weight. I weighed in at the gastroenterologist office as 119 lb with my steel toe boots, meaning I was more like 115.
Today I weighed in at all three appointments as 112 to 114.
Not good...

My awesome gastroenterologist

I had decided that since I had two doctors try to tell me that I had GERD that I would visit a gastroenterologist and see what I could find out.
The one I chose was recommended by my primary care physician (new one since August of 2012). The man is awesome in my opinion. He is 70+ years old and knows his stuff. He doesn't limit himself to just his primary field of study. He makes a great diagnostician.
My endoscopy came back showing mild irritation in my  esophagus and stomach. There was some very minor damage in my small intestines but nothing to be concerned about. His opinion was that my chest pain is NOT related to anything with my upper digestive tract.
When I told him about all of my problems over the past year and a half during my first visit, he took an immediate interest in my case. While waiting for my endoscopy date, he requested copies of all of my scans and test results from my primary doctor. There were some scans and reports missing since they had been done prior to my time with my primary physician so I faxed all of those records over.
He actually reviewed them that same day and called me. He does in fact believe that I have sarcoidosis.

Who I am and why I am posting

As can be seen in my profile, I am a Type 1 diabetic with an autoimmune disease called sarcoidosis and a cardiac arrhythmia that may or may not be a result of the sarcoidosis. The diabetes alone was hard enough to deal with when I was suddenly diagnosed with it in 2008. The sarcoidosis is even more difficult to handle. The heart problems are terrifying.
Here is a link that helps explain exactly what sarcoidosis is:
Sarcoidosis
I have my doubts about this diagnosis. So I am searching for answers.

I decided to start this blog to update family and friends regarding my health, and what treatments (if any) I am doing. I also wanted to raise public awareness of this disease.

I started getting sick in April of 2012. I had a sudden drop in my weight and I was vomiting often. I kept having a feeling that something was wrong with my heart. I had 9 emergency room visits where I was diagnosed with bronchitis, GERD, severe dehydration, and depression. The antibiotics for the bronchitis didn't help, the medication for GERD made me even more sick to my stomach which led to the severe dehydration, and the depression... well, really?

I finally went to my endocrinologist when my primary care doctor wouldn't help. I thought that maybe all of it was related to my diabetes. He told me that some of the problems might be, but he did not believe so due to my recent lab work. My endocrinologist then had another doctor admit me to one of the local hospitals where I had a colonoscopy and a treadmill stress test with echo. Neither test gave any answers for the problems that I was having.

I was then sent to an oncologist at one of the larger cancer institutes in Florida. Though my labs were clear for cancer, the doctor could feel some of my lymph nodes that were enlarged. I was sent for a PET/CT scan and finally something was found that might offer answers. Every lymph node from skull to mid-thigh was enlarged. It was also noted that I had what appeared to be a fracture on the left femoral neck and some reactive spots on my femur, pelvis and one of my ribs. A bone biopsy was not possible due to the area being too small so a lymph node biopsy was performed. That biopsy came back with the suggestion of sarcoidosis. Please note "suggestion". I was told that treatment generally consisted of steroids which I needed to avoid due to my diabetes unless I felt that I could not deal with the symptoms. I was told that it would go away on its own in time.

During all of this, I was still experiencing the chest pain and feeling as though something was wrong with my heart, but the Ativan that I was given for the depression/anxiety diagnosis seemed to help.. a little.

Then it happened. I had an episode at work. I'm trained as a first responder for work so once I made sure that it wasn't a low sugar I tried checking my pulse. I couldn't even begin to count it because my heart was racing. I was taken to an emergency room close to work where, FINALLY, a cardiac arrhythmia was detected. My heart rate was almost 200 when I got there and had most likely been higher when I first started feeling it at my desk. I was having what is called Supraventricular tachycardia.
Remember that depression diagnosis? I'm willing to bet that they picked up on my accelerated heart rate but misdiagnosed it as anxiety.
The medication caused a lot of problems for me. I was in Georgia for Thanksgiving and collapsed. So it was decided to do an electrophysiological study with ablation. The first one was done on December 12, 2012. I continued to have problems so a second one was done on April 5, 2013.

I have continued to experience chest pain since the second procedure. I have a very sharp, stabbing pain that comes and goes just to left of my breastbone. Oddly, this is exactly where I felt a sharp pain during my second procedure where one of the sensors was bumping the wall of my heart. My chest pain expands to under/behind the left breast and radiates into my side below my arm going all the way down my ribs. Lately I am experiencing a "tightness" in my throat where the arteries are.

I have been back to the emergency room a couple of times now. They tell me that nothing is wrong with my heart. I did another treadmill stress test and, though I felt a little tightness in my chest, I am told that nothing is wrong with my heart. I just had an endospocy done and there is no indication that I am having any digestive problems (GERD/Heartburn/Reflux) that could be causing my pain.

So, here I am. I feel like I am back to square one. I do not know if the feeling that something is wrong with my heart is related to sarcoidosis or not. I do not know if the chest pain is even related to my heart. I feel like it is.

I suppose that you can say that I am posting here because I need an outlet. I need to put my stress and concerns someplace. I need to relate my frustrations of looking for a diagnosis. It is my intention to get an appointment with the Cleveland Clinic Sarcoidosis Center. I am hoping that they can offer me answers to all of the pain since it appears that none of the local doctors are helping.