ER Trip and Another Worry

So last night, after dinner, I had trouble breathing. It felt like my throat was swollen. I kept feeling like I had to swallow, and if I didn't, I felt like I was suffocating. But when I did swallow, it was nearly impossible to gain my breath back. After awhile, I was pretty much hyperventilating. So off to the ER we had to go. We get there and tell them what is going on. The ER was a madhouse and so I still had to wait for ages. I was getting dizzy and lightheaded. Eventually, (and seriously I had to wait longer then I should of when I couldn't freakin' breathe!) they got me back and into a bed. The visit was horrible and they were slower then ever before. But to make a long story short, there was some inflammation in my throat but nothing overly major. They gave me two days worth of Prednisone in order to bring the swelling down. They also gave me a nebulizer treatment which helped my breathing. Lastly, they gave me an albuterol inhaler to go home with, in case something like that happened again. (Of course, it took about 45 minutes to get the albuterol from their pharmacy.)

It feels better today. Swallowing is still a tiny but difficult, but much better then last night, and I can breathe normal again, which is obviously a good sign. Here's the funny thing though. I feel so much better in general. (With the exception of not much sleep last night, which they told me might happen due to the medicine in the nebulizer and the prednisone.) But I feel less pain, more energy, I feel less heat sensitive, etc. This actually scares me. The only connection I see is the prednisone, and that worries me that maybe I have something autoimmune. But then again, it's probably too soon to tell and it could just be a coincidence. Who knows.

On the good news side, I am seeing a new PNP on Monday, who is going to help me find a new PCP. Although I do still feel guilty about doing it, it's what I need to do for myself. It has just gotten to the point where I don't see any other options.

Well, that's it for now.

Hope everyone is having a spoonful day :)

There's Always More.

Well, I've been having more issues, but really are we surprised here?

I ended up having to go to FirstCare the other day because I was quite sick. I was dizzy, lightheaded, nauseous, unsteady, weak, felt dehydrated, etc. The doctor first thought I had developed diabetes, but my blood sugar was in normal range, so they then decided it must be side effects from the trazadone, since it had only been a week since I started. So on their instruction, I stopped the trazadone that night. Since it didn't really help with my sleep anyways, it wasn't that big of a deal. I felt better the day after, but now I'm starting to feel like that again. I have no idea what is wrong with me this time. And to be quite honest, I don't think anyone else does either. Back to my regular dr I will have to go at some point, oh boy.

Also at this last appointment, the doctor discovered that I had a heart murmur. He obviously must not of thought that it was anything to be overly concerned about, because all he told me to do was talk to my regular dr about it. But still, seriously, another thing wrong with me? *sigh*

Not Quite As Bad As I Thought

So my doctor appointment didn't go quite as bad as I thought, though it still wasn't great by any long stretch of the imagination. I told him that I was not ok with the thought of weight loss surgery, and that I would rather try to lose the weight on my own. He didn't seem too pleased, but he agreed. We have a 6 month goal, and I need to try to get to a certain number by then. If I haven't, he wants me to reconsider the surgery. I told him I would, but I still don't think I'll ever go with it.

So I'm gonna try doing my DDR workouts again. I love that they have the workout mode, because it shows progress that I'm making, plus it's not as boring as most exercising can be. I'm still not excited though, because last time I tried this it made me feel so crappy. But I'm gonna try to start out very slowly and slowly build up.

I still didn't get my referral to the rheumy though. But he didn't necessarily say no. What happened was that he didn't even give me the chance. Once we discussed the weight thing, he pretty much assumed the appointment was over and left. But, his receptionist came up with the idea that I should call the rheumy's office and have them send the paperwork down to the dr. So I did just that. Not sure if it's gonna do any good yet, but we'll see.

Keep your fingers crossed for me!

Nervousness

My next appointment with my regular doctor is tomorrow. I'm not usually nervous about my appointments, but this one I am.

At my last appointment, I asked him for a referral to a rheumatologist because my fibro is not even close to under control. My fatigue is ridiculous, not much of anything helps me sleep, and I'm constantly in pain. I have to do something to try and feel better, as much as I can. He basically flat-out refused and just told me I needed to have weight loss surgery, and that would cure about 90% of my fibro issues. This is complete bullshit! There are people who are very skinny that still have fibro, and besides, I've been losing weight slowly on my own anyways, and that's the healthier way to do it. This has frustrated me to no end.

It made me think that I should find a new doctor, which I have been trying to do. But, different factors, mostly my insurance, is making it incredibly difficult. Only certain doctors are covered, plus I'd have to switch to the new doctor right away, before I even got to talk to them. That makes me completely uncomfortable. What if a new doctor would be just as bad or worse? And all my referrals would be missed up, my scripts would be messed up, etc. So basically my insurance is just making a difficult situation even more difficult.

So tomorrow is my appointment with him. I am going to tell him that I am not doing the weight loss surgery. I've heard enough about it to scare me. And apparently you can't take your meds for a while after? No way. I refuse. I'd never function then. I'd have migraines 24/7, my trigeminal neuralgia would flare constantly, my anxiety level would be insane, I'd have so much pain, and would never sleep. No, I absolutely refuse. I don't know what he'll say or do after I tell him this. I want to ask again for the referral, but I don't know how to go about it. I don't know to convince him. *sigh*

Update.

So, I'm gonna try to do better at writing in this blog, let's see how it goes.

Physical therapy is going well. Scott is so knowledgeable and so great. He knows what he is doing, and actually takes the time to explain things. Not only that, he understands fibro, and has actually done a lot of research on it. It's very nice to have someone who understands. I told him that I wish he was a doctor so he could treat my fibro, lol. He's doing great work on my knee as well, I can tell a difference already.

Speaking of my knee, I am so annoyed at the orthopedic surgeon who I have been seeing for my knee. At my last appointment with him, he had told me that it was just bursitis, gave me a cortisone shot, and sent me to PT. Apparently, there is also another issue. My kneecap is out of alignment, meaning that when I bend and straighten my knee, it basically grinds against cartilage that it's not supposed to, hence the pain. The ortho wrote that it in the notes to Scott, but never told me. It annoys me to no end that he didn't tell me everything. Believe me, he's gonna hear about it at my next appointment with him.

I'm also thinking about trying to doctor search for a new primary care doctor, but with my insurance and everything else, it's way more complicated then it should be.

I guess that's about it for now, hope everyone is doing well!

A Letter From Fibromyalgia

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia

Ignorance.

So I had a Neurologist appointment today, and this is the guy who is supposed to be an "expert" in all of this sort of stuff, meaning fibro and all.

First off, I waited for 40 minutes because he was behind. (As per usual.) He finally comes in and asked me how I was doing and blah blah blah. He then told me to keep moving and keep pushing myself because my body will get used to it and build tolerance. And that was pretty much it. Literally a 5 minute appointment.

Now, the whole pushing yourself so that your body builds tolerance thing makes sense for the normal person. But let me say, if you know anything about fibro, you are NOT supposed to overdo it, because you can make yourself sicker. Or even worse, hurt yourself. What does this guy think? Does he really know NOTHING about fibro? Is he really that ignorant?

I guess its time to do some doctor searching again. *sigh*

Frustrated

Oh man. Frustrated isn't even a strong enough word to describe how I'm feeling right now. But I'm not sure if I can even come up with a word that IS strong enough.

This week has been the week from hell. And it's only Wednesday. It needs to stop. Like right now. I honestly don't know how much more of I can take. I just really really really don't know. I've been in SO much pain and SO tired and just generally miserable. It's been like this since Sunday. And today with the rain it's been even worse.

I went to the doctor today, which was not much help as usual. He is just stumped and doesn't know what else to do. I have either been on or am on everything he can think of, not just including FDA approved fibro meds.

Too much pain to even finish this. Just wanted to quickly update.

<3

Pain....and other things...

Ok, so I suppose its time for a new update, since it's been awhile.

Last week was pretty much same 'ol same 'ol. I ended up going to First Care at Maine Med for my knee on Wednesday night. They took x-rays and such and couldn't find anything. The doctor then did an exam, and he said that he thought I had bruised the bone. They wrapped it in an ace bandage, told me it would be 2-3 days til it felt better, and then sent me on my way. Oh man was I in pain.

We got notice from Dan's insurance company that his car was totalled. Not good news at all. So on Thursday we went up to Richmond to get everything out of it, which was actually alot of stuff. I didn't even realize we had that much stuff in his car! And man was that painful on my knee doing all of that work. But Dan was good as usual and didn't make me do more then I felt I could handle. Unfortunately, what I "thought I could handle" was more then what I really could.

We then went to South China for a couple of days since we were right there anyways. We stayed until Saturday and then came back to Portland. During which, my knee was still killing me, and the ace bandage wasn't helping any....in fact I feel like it was making it worse because it was cutting into the skin. (And I didn't even have it that tight!)

This morning I woke up and my knee hurt even WORSE. And it had been 4 days. I knew something wasn't right, so I decided to go back and see another doctor, because I just wasn't ok. So we went to Mercy's FirstCare and saw a doctor. She said the other doctor WAS right, that is a bruised bone, but that it def wouldn't heal within 2-3 days. She said it may be a few weeks. She then gave me a knee immobilizer to use and crutches to use in extreme circumstances. I'm glad that it was nothing serious, and that this doctor had a clue. But man oh man, the pain is so extreme and I don't have anything for it. It's worse then my fibro pain I think. But then again it's hard to tell, because it is probably both acting up.

Sooo on Wednesday I have a doctor appointment. After talking to some people, I have decided that I am SO going to put my foot down and demand a referral to a pain specialist. I don't care that he thinks I don't need to see one. I have been in so much pain for so long now, and none of the fibro meds seem to be helping, so I NEED to do something. And as much as I would hate to do so, if he doesn't oblige I will start looking for another doctor, although like I said, I would hate it if it came down to that.

Well, I guess thats it for now. I hope everyone is doing well! <3