A tad late

10/22/2013

It is 1:45am as I am writing this. Pain is a strange thing and even stranger when it is chronic. Usually it causes much fatigue and I usually sleep at least 8 hours a night because that's what my body requires. Pain is very tiring. But there are sometimes when I let myself get inso much pain that I can't sleep. This is one of those nights. Not to mention my medicine has one of 2 side effects. 1 being it makes me drowsy. 2 being it wires me. Tonight it chose number 2. 

Now for my doctors visits updates. 2 weeks ago I had an MRI on my knee and a ct scan on my shoulder. Results: both came out completely normal. It's not surprising seeing that I have had 30+ scans and only 2 have showed anything then they do surgery and the surgeons are surprised everything when the scan misses all the damage and tumors they find during surgery. The MRI of my knee should have at least shown my previous surgery and the life long damage I will have in my cartilage. The ct scan should have shown my clavicle missing part of it and not attached at the acromion process. This tells me one of two things that either the radiologist is reading the scans so fast and saying its normal and the doctors just taking his word for it or quickly skimming the scans as well OR I am just an unbelievable human being with super powers that defy scientific testing machines. If it's number one shame on you doctors and give me back my money and if it's number two then you should study me more.

I mailed the shoulder ct scan to my surgeon in NC. All he needs it for is to measure my clavicle to figure out exactly which surgery he wants to do. I guess it will be a surprise when I wake up from it. 

I saw my asshole knee surgeon (yes he deserves that name) 2 Fridays ago. I was almost positive that he was going to fire me as a patient since they didn't collect my copay or the disc that they told me to bring on the MRI. He walked in and asked how my knee was. I said the same. Then he said the MRI was negative. I said I already know. He then asked what I thought about it. I said I think it's wrong because normal knees don't act like this. Then SURPRISE!!!! He asked if I wanted the surgery. I said yes. He then quickly explained that he would scope the knee and told me all the risks and asked if I had any questions. I was so shocked that I didn't ask any questions.(but seriously what is there to ask when I've had this surgery 3 times before and they refuse to do something different to actually fix the problem). The nurse called last week and I got the surgery date of December 4th which I had to decline due to the shoulder surgery December 17. I can't use crutches and have my shoulder immobilized at the same time and my body cant handle anesthesia back to back 2 weeks apart. It can barely handle 4 -6 months a part. But no worries. They said I can call and reschedule once my shoulder is healed so I will most likely he having it in March (maybe with my tubeligation...mom, we should talk about that call me once you read this) 

All and all I will finally get the 2 surgeries I've been trying to get for the past year. In the mean time I'm starting to get new problems but can't go see a doctor about it until I get all my medical clearance for this upcoming surgery. Until then I shall suffer in silence. 

North Carolina - The place for me.

9/24/2013

Hey y'all,

I mentioned in one of my last posts that I was travelling to North Carolina to visit a surgeon for my shoulder. I didn't go in with high hopes because if you don't have them in the first place you can't be disappointed. I have good news. I left with a smile on my face which honestly hasn't happened in awhile.

I spent 2 and a half hours at the doctors office. Only 20 minutes of that was in the waiting room. I call this a feat. The nurse was extremely nice and even made a joke about putting on a "very fashionable gown." I then went to take x-rays, in which they asked all the important things like when my last period was and if there is any chance I could be pregnant. They put the lead shield over my ovaries, which is great. Even though I won't be needing them, I still don't want ovarian cancer caused by too much radiation. I then went back to my room and the doctor then came in with a laptop. He introduced himself. Showed me my x-rays and did an extensive examination moving my shoulder and arm around while feeling my clavicle. He was able to feel it coming out of place each time he moved my arm. He then asked why my shoulder hasn't been fixed yet (it's been almost a year) because this is a miserable injury. I gave him an answer and he said oh well, I am going to fix it. He discussed the procedure he wants to do which is drilling 2 holes in my clavicle and weave some "stuff" through it and wrap it around to hold it down and graft some ligaments to my clavicle and shoulder. I have a more scientific explanation but oh well. There may be a problem with this procedure with my bone not being thick enough since I have already had part of this bone removed when they removed the tumor from it 5 years ago. If that is the case they will add a metal hook plate to my clavicle instead of drilling holes through it. They will still graft ligaments to it to hold it in place. I said sounds great. He said he just wants to take a few more xrays and run a ct scan to see how thick the bone is to plan the route he will be taking. I went for the xrays and came back. He told me to choose a surgery date. I said December, and bam! I will be having surgery December 17!!! WOOOT WOOT! He then sent his PA in to discuss the procedure with me more and to have me read and sign my risks and procedure form. His nurse then came in to give me my ct prescription and some forms to take to various doctors to sign for surgery clearance.

So with all this being said I have to meet with 3 doctors to get their clearance for surgery and have a ct scan then December 17, I will be cut open and my shoulder will be reconstructed. It is actually an out-patient surgery but I have to stay in NC for a couple days to make sure my body doesn't reject the grafts and that I am in stable enough condition to make my 2-3 day travel home since I won't be able to do it all in one day. If all goes as planned I will be getting home on Christmas eve. (For those of you getting me Christmas presents please be nice and put them in a bag seeing that I will only have one arm to open them.)

Risks of this surgery include the normal: infection, failure, allergic reactions, blood clots, limb loss, paralysis, and death. Specific to this surgery: ligament grafts won't take and/or my body can reject them, and broken clavicle. There was actually 2 full paragraphs of this stuff but I can't remember it all and I am willing to take all risks.

After the surgery: I will be in a pillow sling for 6 weeks not being able to move my shoulder at all, only my hand and I can extend my elbow twice a day so it won't lock up. I will not be allowed to drive for 6 weeks too. I will then start therapy after the 6 weeks to get back some movement in my shoulder. (I will never have 100 percent range of motion.) My dad was nice enough to remind me how much pain I will be in. I didn't even think about the pain after surgery until he brought it up. I have had 19 surgeries and the most painful one was the previous one I had on this same shoulder. The pain will be the same since it deals with more than just bones. Let me try to explain how much pain it will be based on past experience. Have you ever had a broken bone? I will have similar pain to this but just amplified since they are drilling holes in my bones. Ever pulled all your muscles in your back? Well, this pain will be like that seeing that there are many muscles connected to your clavicle and shoulder. Ever had rotator cuff surgery? They will also be cleaning up damage I have in that area so same amount of pain. Now just add all this pain together and the general pain of being cut wide open (about a 4-6in incision) and that is about the amount of pain I will be in. I will not complain about this pain I will just sit there and cry when I have other people wash my hair for me. I will live at my parents house for the first couple weeks after surgery then I will go back to my own house when school starts back.

I was so excited to get home to write this. There are good doctors out there, it just takes a lot of work finding them. I would like to take this time to thank my mom for finding the doctor and going with me to the appointment, and I can't leave my dad out in case he ever decides to read these. Thanks for watching my fur baby while I was gone.

Bye!

This is an x-ray of my shoulder. Take notice of the clavicle (the collar bone) and how short it is and how it isn't connect to the shoulder like it should be. If you cant see this google a normal x-ray. I also see 2 tumors on my ribs and my arm is bowed but those things aren't bothering me right now so all is good.

Studying is a pain

I never knew how much studying hurts until laying down after an hour of sitting in my bed studying. I sit with my book propped up on my bent knees. This causes my legs to ache. My ankles hurt along with my knees and hips. My lower back has a lot of pressure even though I lean against a pillow and this causes my sciatic nerve to act up and tingle and cause sharp pain. My mid back has muscle aches from being hunched over. My neck is tight and is getting a crick in it from looking down for so long. I have a headache stemming from my occipital nerves from focusing my eyes so much. My wrist, hand, and fingers hurt from writing. And then you have my brain. It's fried and I still have more to learn. 

It's been awhile

9/17/2013

Hey guys,

It has been a while since my last post. I haven't posted because for about 2 months I convinced myself that I would never have to see a doctor ever again and also because I have started school again which keeps me busy.

I will start with the past couple of months worth of doctors visits. Usually this would be a very long story but like I said I haven't been going to the doctors (well not often at least.) I saw a doctor in July that claimed he was "the best shoulder surgeon in Memphis." Well, he obviously isn't the best because he does not feel confident enough to do the shoulder reconstruction surgery that I need. I then went a whole month without seeing another doctor until I had to go to the usual doctors like my neurologist and a few others that I see every 3months or so. No big story there other than I had to wait a few hours to see the doctor so I clipped all the safety pins in a jar together to make a long chain. I saw my primary care doctor 2 weeks ago for strep throat (thanks Chris for giving that to me) but after a round of antibiotics my throat is feeling all better.

This past Friday, I went to that famous orthopedic group in Memphis again and saw the same knee surgeon that told me he wouldn't do my knee alignment surgery until my shoulder surgery was completed and healed. Well, I obviously haven't had any shoulder surgeries but I went to see him again anyway because my knee keeps giving out on me multiple times a day and that's just not fun. After a quick 2 minute examination he said that my pain has moved and that it is in the side of my knee and not my knee cap. I agree with this except for the moving part. I have never in my life had pain in my knee cap (except those few times where I hit it on something) and it has always been on the side of the knee. He said it seems like it is a cartilage problem with a torn ligaments and what not. I really wanted to say "no shit Sherlock" but I refrained and said "well I do have a bone disease that affects my cartilage." So he said that he will not realign my knee because that isn't what you do for my knee problem even though my knee isn't aligned properly. He then said that I will need yet another MRI before he will even consider scoping my knee to fix the damage because he wants a plan of action in order to stick a camera in my knee. I believe that he is just running up the bill but no worries, I refused to have the MRI done at their office so they couldn't get all the profit off of it. And my plan would be as followed: step 1 put me to sleep, step 2 make two small incisions, step 3 insert camera, step 4 clean damage, step 5 remove all foreign objects and sew up incisions. Brilliant plan, I know! So I will post about my next visit after it occurs.

Other than my rare bone disease and seeing orthopedic surgeons that all claim they are the best but won't treat me, I have been having some common ailments that just won't go away and are really putting a damper on my life at the moment. I have had a migraine headache for 6 days now. (I'm at the point where I am sitting in a cold dark room wearing sun glasses just to look at my computer screen to type this and to study.) When I get migraine and don't treat them fully in time they stay forever. Last time it stayed for 4 months. I have tried the usual: caffeine, sleep, ice packs, hot showers, allergy medicine, over the counter pain meds used for headaches, pain meds, and migraine medication. If they do help it is only for an hour then it comes back. I will call the doctor next week if it doesn't go away. Also I have had nightmares for the past 3 nights in a row and I think they might be related to the headaches.

Oh, I see a surgeon in North Carolina this coming up Monday to see if he can do the shoulder reconstruction surgery. I have already been emailing him x-rays and giving him back ground information, so I am somewhat hopeful.

As I have mentioned school has started back again. It has been harder than ever to keep a straight face and act like everything is going well. I hope I have succeeded in doing so. I do have one good thing to say about that, even though my body is falling apart slowly my mind is still going strong. (well maybe until that first biochem test tomorrow)

Thanks for reading,

-me

P.S. I will start posting regularly again.