Bullet This

This feels like one of those blogs that might not ever get off the ground. I have been staring at the screen for a while now and it is beginning to sink in that maybe the only way this blog stands a chance of making it into actual words is if I go "bullet style." That way I can just shoot thoughts out as they come, rather than to come up with something "cohesive."

• I wish I could explain what the last week has been like, but I don't think I can. The relief of being given the SSD benefits and not having the hearing was short lived.
• I know this sounds crazy.
• I was so tired from not having slept hardly at all before the psych evaluation that my fibro symptoms were out in force. Add all of emotions that came with finding out about the SSD decision, plus some other things I will tell you about later, and I was a MESS.
  
• When I say MESS, I mean a crying ball of anxiety that constantly was having to be peeled off of the floor or ceiling. Yes, there was pretty much constant crying. Horrible depression. And my fibro symptoms were on overload. Everything hurt. All I wanted to do was sleep. None of this evened out until about Saturday. I finally slept enough that I was roughly back to normal.
• That meant that my migraine took over as my primary pain maker, once again, and life felt a bit more "normal." Ugghh.
• JJ said something in my comments about how I would have felt better had I not stressed so much. I laughed when I read that. Absolutely true. However, I do not remember a time when I didn't stress about the smallest thing. And this was pre-migraines. I used to have conversations with myself in the mirror daily in junior high school. It was a coping mechanism.
  
• Thinking about that had me pondering when I didn't feel stressed. I couldn't remember a time. Before I was 10. Before my dad got sick. Pre-1978. Yeah, that is the last time I remember truly feeling stress-free. Ever since then, not so much.
• I can't say I haven't had moments. Summers when I was out of school after my dad got better. But, after high school, no. And during school, no.
• My dog is having an "issue" with her front leg. There have been numerous visits to the vets, x-rays, etc. She has been on pain pills and anti-inflammatory pills for about a month now. The vet is saying that he doesn't see a break, fracture, puncture wound, or what traditionally presents as cancer. However, since the swelling isn't going down and she is still not wanting to walk on it, everyone is concerned.
• People who are not animal lovers are not going to get this, and I am not going to be able to explain it to you. Right now, the only option left is to biopsy her leg, which is going to be done tomorrow. It will take a while for the results to come back.
  
• She is twelve years old. I am not sure how many years she realistically has left. If it is cancer, we are talking about amputating one of her legs. I don't know if that is the humane thing to do or not. Or just the selfish one. I am really struggling with it.
  
• I know I am struggling with a decision that I might not have to make, but cancer really hasn't been falling my way here lately. And I don't feel lucky.
• When I got Miss S. she was six weeks old and she fit in my hands. I held her like an infant. And I still do. She only weighs 20 pounds, so I can get away with that. In fact, when she is scared, it calms her down. Not many dogs like being held like that, but she does.
• I don't know if this is a better or worse case, but I have figured out that I am a proactive person. A doer. This is all nicely phrased for something of a control freak. So, the things that make me most "crazy" are the things over which I have no control.
  
• Understanding that put all of my friendships that have gone bezerker into perspective for me. I worked on them and worked on them and worked on them, but I was the only one doing the working and got nowhere. I was spinning my wheels. The ball wasn't in my court. Yes, it made me crazy.
  
• And I went to doctor after doctor who wouldn't listen to me. I got sicker and sicker. And that made me crazy. Finally I found one who did. And then I was really sick. And down the rabbit hole. And here we are. But, I learned a lot.
  
• And then my dad and aunt died. And I had no control over that. Crazier still.
• And now my dog. Welcome to Insanity Land. Or as I call it Home.

image found at www.weheartit.com

LOST IN SPACE AND A HINT OF JASMINE

I promised I would post the "after" before it became months after and here I am. I decided I better get it down while it was all fresh.

One of my doctor's said that I might discover just how much my meds are doing for me when I come off of them for this test and go without. That was partly right. I did find out how much they were blocking many of my symptoms because I was down and out miserable for the three days prior to the test and going in to the test. In fact, I was in such bad shape the doctor had doubts about my ability to get through the test (but that is jumping ahead). It did confirm to me that I have a bad case of fibromyalgia, in case I had doubts. My hands and feet felt like someone was pounding nails in them the first day. Then they were on fire the next day. The day after that they were just ice cold and sweaty and hurt. Sleeping was iffy all three days. My TMJ reactivated in a big way. And I couldn't breathe deeply because my left side hurt for two days. I also had a meltdown on day three when I was convinced I was having a heart attack. That was when my hands and feet went numb and shooting pains when down my left arm. Of course, none of this was helped by the fact that I dreamt that I died on night one and I literally felt my spirit leave my body. It was very peaceful and I think my dad was there. Also, all of my nerve endings were screaming. I could hear and smell everything. Anytime I breathed deeply my teeth hurt. I constantly thought about pulling all of my teeth out with pliers. 24.7. By day three all of muscles went into involuntary spasm including the ones on my face. So, I was literally this jerking mess who had no control over my body. Now, throw in the fact that I was so dizzy all of the time and couldn't eat for three days because I was constantly nauseated and you have a fairly complete picture of what I looked like on Monday for this test. Oh, and coming off my meds gave me the runs. It REALLY wasn't pretty.

So, when the doctor said we might not be able to do it, all I could hear in my head was Joy from MY NAME IS EARL. Joy has a foul mouth. Fortunately, I kept it inside. But, Joy said, "Ah hell to the no."

And Robin said, "I think we should give it a try." And that meant pulling it together and exercising every last bit of control and getting through it because I was not going through this again. Of course, somewhere in that drug induced nightmare, I already decided not to go back on some of my meds NO MATTER WHAT. Yeah, you read that right. Doctors are funny people. My doctor would have read that and said, "But all of that pain was caused by you going off that medication."

My response is this: "But sir: I wasn't THAT BAD BEFORE I WENT ON!"

And that says to me that something has to give. Yeah, I had a lot of pain. I was hurting. I still am. But, I wasn't a freak show.

Back to the test.

I made it through. And found out some bad news about my inner ear. Turns out that most people who have an inner ear problem usually have a problem on one side. That is not great but one side can rehab off the other side. That reminds me how amazing the body is. Turns out that my inner was blown in both sides. I have less than 30% function in both sides. It totally explains the dizziness I am feeling. The doctor says that I literally cannot find myself in space. There are no pills, no surgery for this. However, there is vertibral rehab. The idea is to (re)teach your inner ear all of this stuff that it used to know. Until then, I am very reliant on physical and visual cues. It is why I always need to lean my head against something in order to not feel sick to my stomach. That is how I know where I am in space. It is why I spend a lot of time holding onto walls when I walk. Quick turns are not a good idea. It is why I landed in the bathtub that time after flushing the toilet.

As for the what caused this? The doctor doesn't know. It can be anything from medications to an infection to an autoimmune issue. The thing is that there are lots of causes. My gut says that it is one or the combo of these meds to treat the fibro and the antidepressants. They have all had bad side effects with me. Namely they continue to make my hair fall out. I realized that in my three day horror when all of my senses were heightened and I was lying in bed with nothing to do but think. I have already begun the search for natural alternatives and will suffer the difference. I am going to push my doctor for rehab alternatives to treat my fibro, as opposed to medicinal ones. I want my inner ear to repair itself; I don't want it battling against any drugs that caused the damage in the first place.

As for the hint of Jasmine... I finally met The Yellow Rose of Texas... my first blog friend come to life in person. My only wish is that I had been in a healthier place. She caught me the day after the hearing test. I was back on enough of my meds that I wasn't a blobbering fool. Plus, I had gotten some sleep. We only met for a few hours and it was pretty much all spent at yet another one of my doctor appts (yes, the timing was sucky). However, she was delightful and it was exciting how many ideas we had in common!!! Not only that, but shared life experience! How exciting to say... and then this happened, but I learned such and such and to have another voice pipe in and say "Me too!" Yes, it was a great time! We laughed a lot and sighed a lot and did some head shaking over some life lessons that we wish had come easier or sooner... but it is what it is! My only regret is that we forgot to take a picture... not that she would have let me post it... lol.


image found at www.weheartit.com

It's All A Brain Game.

Mrs. B featured my blog on her blog. She is participating in a hop. I don't have the energy for a hop. In fact, I think I need to go back to the bullet point style. I can feel my brain about to go into the crazy loop.

• Whew, such a relief. I can now just fritter around like a hamster on a wheel and it is totally cool.
• Sadly, I feel a lot like a hamster on a wheel.
• Running and getting nowhere.
• Well, I did go the library, pharmacy, and grocery store today.
• Sadly, the pharmacy said that there was an hour wait on Rxs, so I just left. I could have cried or something, but I had nothing left. So I left.
• I think I have two more pills left so it isn't a total emergency. Yet.
• I actually did go on youtube for a few minutes and look up some Ellie footage. Why don't we have a looksee? Roll that footage, blogmeister:

• If you click the bottom right it will enlarge it to fill your screen. The escape key will bring it back to normal size.
• If you didn't understand why I love Ellie so much before, I bet you have a better handle on it now. She totally goes to battle for the people she loves. I am down with that.
• I have been distracting myself with facebook and this game on there called Gardens of Time. I like it because it is a memory game. It is kind of like Where's Waldo. You have to memorize the scene and you play it over and over.
• Why is this important? With my chronic fatigue and migraines, my memory is terrible. It is actually stretching and working my memory muscle.
• Before all this went down with my dad, I started doing beginners yoga.
• I am a very odd case. Even though I have fibromyalgia (which means aching joints and muscles), I was super flexible as a child. So, I am still more flexible than average as an adult.
• So, I have a high flexibility, even though everything hurts like crazy. So, I can do yoga. It just hurts. And, I don't do some of the postures very well (aka downward dog).
• My doctor says just to do the best I can without straining.
• Right now, I am not doing at all.
• I am mentally trying to get there again.
• It is all a brain game folks. That was something that I already knew, but reading Chris's blog, A Deliberate Life, reinforced.
• Do you feel like I have I haven't really said anything? Me too.
• There are a few ideas that swirling around in my head. Mom and I listened to a portion of a book on CD on the drive. One of those ideas was "there is no stopping an idea whose time has come."
• I think about that a lot with regard to my Big Idea. I have an idea for a non-profit that I have shared on here. If you want to know more click on My Idea in the sidebar.
• He also talks about Inspiration. Inspiration coming from God. And when you are in tune with your Inspiration that is when Action happens. Things just start rolling out. There is no stopping an idea whose time has come.
• And then I think about that pastor who said that I was blessed by God.
• And hearing a voice telling me that this is what I was supposed to be doing.
• I know that I need to get past all of this grieving so that I can get inspired, so that I can get well, so that I can get into alignment with my idea.
• Because there is no stopping an idea whose time has come.

THE DOCTOR APPT BREAKDOWN

Blogging to you about my doctor appointment is nearly as frustrating at the appointment itself. The reason I went to see this doctor is because someone that I know who is on Social Security Disability got their benefits through this website: allsup.com. I looked up the website online and then I called them, and decided that using them is the best way to go. Filing for SSD is a challenging task all on its own. In other words, pretty much anyone who actually needs SSD is too sick to deal with the paperwork. It's one big circle. The allsup website had an 800 number and I talked to a live person about this process. It was very enlightening. If allsup takes your claim, they fill out all of your paperwork and chase down all of your medical records. That is a blessing. Right now, they won't take my case because the say-so of my primary care doctor isn't strong enough to assure me of a win. That was the reason for seeing a "specialist" yesterday. This was an important appointment. If the specialist wasn't in agreement with my doctor (that I need SSD), there could be problems.

Turns out that the specialist wasn't completely in agreement with my doctor, but wasn't in disagreement either. In other words, he agreed that filing for SSD was the right call, and that I wasn't capable of working right now. In fact, I was right to sell my car, because I had no business driving. I am doing that because I feel the same way. (I don't think I blogged to you guys that I was doing that, but it will be gone May 5-6. Then my mom and I will be sharing a vehicle. She will probably drive me most places. Doesn't that sound fun?) He is not sure that I have fibromyalgia, but he's not sure that I don't. It is a tricky thing to diagnose. He is more worried about some neurological stuff that I have going on aside from the migraines. I see more tests in my future.


Of course, for me that is a good/bad situation. I am thrilled to find a doctor who is all about getting to the root of the problem and acknowledging that the "fix" is going to likely come in small steps. My problem is that since I have no job, I have no money. This is financially killing my parents and I hate that. My health insurance plan doesn't cover a lot of this stuff. I am going to talk about that and see what I can do to change plans. I know that will spike my premium. If it offsets my other charges enough, it will be worth it. Talk about medicaid has been tossed around and I am willing to talk to someone. My gut tells me that I can't apply for it unless I am already uninsured and that is risky. Throw in how long the application process takes and the possibility for being turned down... ugggh. I loathe government red tape. That is one big ole bureaucratic elephant right there.

The biggest "victory" was that he listened to me. In the end, we both agreed that I had a lot of different problems at work here. That meant that it was going to take a long time "win it" because it was going to be a one thing at a time deal. And there might be some problems that we never actually "solve," but we can put a leash on them. So... I will take that as a win. Plus, he didn't prescribe me anything new. How about that? Not many doctors really want to get to know your situation, think about it in between your visits, run some tests, wait on those results, and then make a decision before they start writing on their prescription pad. I think that we just might get along fine. If he starts suggesting vitamin supplements.... well, then I know that I have hit the pot of gold at the end of the rainbow.