Monthly Archives: May 2016

What is that bright yellow thing??

OH MY GOSH!! There is a bright yellow round thing in the SKY!! Yes ladies and gentlemen we have SUN!! Luckily I have transition lens otherwise I think I would be sinking into the ground from the brightness! I would be standing outside all day but a) I surely would burn in the first 5 minutes since I am pasty white and b) I can’t stand for long periods of time so I’m just out of luck! I did walk outside for a couple of minutes just to feel the warmth on my skin and soak up a little vitamin D before my body began to hurt.

Today the most pain is across my upper back. I feel like I have a really heavy backpack on. Yesterday I was experiencing chest pains again, I checked my heart rate and it was 140…it should not have been that high. So I am going to have to bring this up with my doctors again and see what they think. It could be related to my thyroid. We are confident at this point the issue isn’t stemming from my heart so we have to look at other areas in the body. I know with fibromyalgia you get the pains across the upper back so I believe that is what is causing that pain, at least I think that is…you never can tell with me. I still have a bad headache on top of everything else that is going on right now.

The doctor is going to tell me I’m falling apart again, I’ll just sweetly smile and say YES. There isn’t much else I can do at this point. I know he’s going to run a couple tests tomorrow but that’s a given at this point. I am used to it, I just wish I got a sticker at this point! I mean when you are a kid you get a sticker, why can’t you get a sticker as an adult! I should tell Mom I want ice cream! I don’t think she’ll go for it, but I should try anyways!

I am ready to crawl back into bed! Which it’s so pretty outside I also want to enjoy the day because it FINALLY stopped raining! Oh the battle of chronic pain!


Steel trap? More like a sieve

So I used to be able to remember EVERYTHING. It was very handy when I was a school teacher. Especially if I wrote it down. I had this ability to remember things really well if I wrote it out, I was able then to visualize it and then I was good to go. I loved to color coordinate things as well. I was super organized and I LOVED writing things down on a calendar. I still do. I have to write things down, but I don’t have the same recall like I did before the fibromyalgia. Today I have serious brain fog an I keep forgetting what I am doing. This morning I was in the middle of a project and I totally forgot about it and I sat down at the computer and 10 minutes later I look up and realize everything is still sitting on the kitchen table waiting for me to finish it.

One of the pharmacists at the coumadin clinic laughs at me because I have to have a specific color highlighter on my paperwork, I am very specific! He just laughs because if he picks up the wrong color I make him change it. Last time he picked up the right one without me correcting him! He’s learning!

It’s raining AGAIN, I didn’t want to get out of bed today, I’m actually thinking about climbing back in it to take a nap. I have a migraine and I am so sore. This wet weather is really playing havoc on me. I will be glad when we finally dry out a bit. I just want some warm sun on my face! Of course when it’s 90 degrees and we’re in desperate need for rain everyone is going to remind me of when I begged for the rain to stop.

There just needs to be a bit of balance! I mean like everything else in the world right? Balance makes things better!

The rain is falling EVERYWHERE!!

So we had over 4 inches of rain fall this month! CRAZY! I hope the gardens everywhere are SOAKING IT UP! I mean I want lots of fresh veggies at the local farmer’s markets, because someone should be benefiting from all this rain, rain and yeah MORE rain! The wifey planted a small garden for us and she has a few more plants to get in, but all this rain has made that a bit of a difficult task!

My knees have been rather swollen, I noticed last night they were about twice their normal size, they still have a nice click, click, click, if I was Dorthy I wouldn’t have to click my heels, my knees should do it! I could just close my eyes and bend my knees “There’s no place like home, there’s no place like home!”

I really am over being sore. I had to turn the spinal cord stimulator off for a bit earlier to give my stomach muscles a break. I have had my stimulator turned up higher than normal because I am in more pain, so my stomach muscles can feel the buzzing which normally they don’t. So I can only take that for so long and then I have to give them a break.

I do like the stimulator and I am glad that I have it, if only it covered my WHOLE back I would really be in business! I mean my upper back and lower back I wouldn’t complain. Actually they are working on a wireless one that can be put in to do other regions and I do believe they will be able to do neurocord stimulator all over the body in the next few years. So who knows maybe in the next 10 years I will have the ability to have it over my whole back….

For now I am going to enjoy the coverage on my low back and legs. Try to cover up the really annoying nerve pain in my feet and enjoy life because life is too short!

Sore, sore and more sore!

The sun is out, but I think every muscle is sore. I feel like I have been hit by a mac truck! I noticed this morning that I had a bit of an aura, and I wonder if I had a bit of a migraine. I have a bit of a headache, but that’s pretty normal these days. I hurt from between my shoulders, down my left side, across my low back down both legs yeah pretty much my whole body. Gotta love fibro….not really…

Every time I move something is cracking, popping or snapping. I think I might be a huge box of Rice Krispies…just in human form. Or maybe I just ate too many when I was a child.

I have been trying to walk around a bit and stretch the muscles out a bit very carefully. The hard part when you are this sore is that the LAST thing you want is to walk around and stretch! However a warm shower did feel good. Before all this mess happened I used to like hot showers, now I don’t! I only like warm showers. The water sometimes bothers me, the feeling of the water on my skin will set off the nerve response.

If it’s not one thing it’s another right?

Ding, ding, ding round 3!

So I will be having surgery 3 or 4 if you want to be technical since I had 2 surgeries last time-they just happened the same day. The big issue this time is my risk for a blood clot has increased significantly. So in the surgery plans we have to talk about how can we reduce the possible risk of another blood clot. What can we do to have the best possible outcome? This means more appointments with specialists who can give consults and their expert advice/opinion on the best course of treatment.

I have met with my surgeon, I am going to set up appointments with some specialists and I have some imagining that needs to be done. We are going to take everything step by step. I had someone ask me are you sure you need this surgery? Yes, I’m sure! I’ve had a couple doctors look at the film they all agree I need the surgery. It’s hard when you have had surgery every year for the last 2 years and you need another one this year. HOWEVER I am taking this all in stride. I know all is well.

I know things are good, we have a solid plan. I’m glad I have a solid team of doctors to take care of me. I will be glad to get the rest of these ducks in a row and have this surgery, I’m at the point where I just want it over with! The prep for the surgery is the worse! The longer we go the worse the possible nerve damage can be, which I know from my leg.

Speaking of nerve damage in my thigh…so the other day the doctor was doing a check of the blood flow in my legs and he pressed right above both knees and it was the weirdest sensation for me because in my left leg I could feel him pressing, but in my right I couldn’t. I knew he was because I could see him, but my right thigh is still numb from surgery. I will never get the feeling back in my thigh at this point. They were hoping I would, but at this point the nerves have been damaged for so long I am as good as I will get.

Right after surgery I would drop my right foot a lot when walking and I have built up the strength that I don’t do that now (unless I am really tired), but I still do not have the same muscle tone/strength in my right leg like I have in my left. I have been working really hard in physical therapy to try and build up those muscles in my legs to help support my body because I want to be able to move again. Moving after this next surgery is going to be critical in preventing a blood clot.

Let’s Move It, Move It!

Dr. Google

So a group of people are talking about different symptoms and one of the ladies said the worst thing I ever did was Google my symptoms. The second woman says to her Dr. Google is the worse! The third woman says I know, I went to Dr. Google and I found out I was dying! The group of women gasp at the news look to the third woman and she responds then I went to my real doctor and found out I had strep throat…..

The women give a huge sigh of relief that their friend is not dying, and the third woman continues THAT is when I learned never use Dr. Google…their medical degree is unreliable and you almost always end up thinking you’re dead! To that the women start to chuckle, and tell of similar stories of looking up symptoms on the Internet using different websites and almost always finding out one they went to their physician that their condition was much milder than they self diagnosed.

Researching on the Internet has definitely become a two edged sword. It is a good place for information, but sometimes too much information especially with chronic illness can actually be a bad thing! There is nothing wrong with looking up information as long as you can be objective about the results of your research. You can research without thinking that you are dying. You can research without then going to your doctor and assuming you are right and they are wrong. That being said are their cases of doctors missing diagnoses? Yes, I had that happen to me before. There is nothing wrong with getting a second, third sometimes even a fourth opinion if you need it.

I think you just have to remember that if you are going to a good doctor they have gone to medical school they have years of training and practice and they do know what they are doing. I know as a patient it gets frustrating sometimes, especially when you are sick. You want to be better like yesterday. You want to get your life back, you want what you had. I am really frustrated with my knees. I am tired of this let’s just wait, but I know we need to just wait. There is nothing wrong with being an advocate for yourself because you know your body better than anyone else, but you also need to find the best doctors because they know medicine.

It needs to be a team. Some teams are bigger than others, but it still needs to be a team. My team got bigger after the surgeries and the blood clot. Making sure decisions are made to help me feel my best. So while I’m not a medical doctor, I do have a team of them helping me make decisions when needed.

Rain, pain and a drop of blood

Bad storms are a brewin’! There was hail the size of golf balls in the DC area yesterday thanks to social media we got to see pictures. My head and neck are really hurting still. I think this is my body’s way of telling me it’s time for surgery. Last night I woke up in the middle of the night and my arm from the shoulder all the way down was totally numb. This then caused my leg to slip and hit the bed frame which wasn’t happy!

So as I’m re-telling this story this morning wifey said to me that the bed frame and I just can’t seem to get along! I mean I got a concussion from it last year (yes that is a true story…) and now I hurt my leg. So she goes maybe when we replace the bed we need to get a softer gentler frame. I laughed and go NO! I might break a softer gentler frame! I mean this one takes a beating and keeps on trucking! I think it’s all in your perspective!

So I have to get my INR checked today and it’s been running low so we’ll see how that goes, good news is that is only a drop of blood. Then I have to get more blood drawn for more labs to try and figure out the potassium and other health issues which are more complicated. So everyone is agreeing that I can come off the blood thinners before surgery, but we are keeping me on them until closer to the surgery because the therapeutic value of having me on them outweighs me coming off them now. If I didn’t have to have surgery this year I would stay on them a full 12 months. So if we can get as close to that 12 month mark as we can the better we all feel it will be long term. Of course now that I have had this massive blood clot the higher my risk for a 2nd one will be.

I am also going to ask for blood work to be done after I come off the blood thinners to look for clotting factors because I think we all need to know before the next surgery if I have even more issues like Factor V playing into this. I mean the more we know the better we are walking into this next surgery. I was not prepared to get a massive blood clot last time, and we know that my veins are compromised this time so things will be handled differently for sure. I also am more aware of the signs of blood clots.

All that being said I’m at peace going into this next surgery. I know I need it. I’m not thrilled about needing it, but I know that for my overall health I need it especially with the issues with my arms and hands. I know we just have to be smart about it. Trying to get all the ducks in a row before surgery, get all the puzzle pieces before surgery too.

Red hot…face…

So in addition to all the pain my face is red hot…or at least feels like it’s burning up. Now wifey seems to disagree with me on this, but I feel like my face is burning up, but I do agree that to the touch it does not feel as hot as I feel internally…if that makes sense. My temperature does not register this, it actually has been lower than normal. My cheeks have been redder than normal, so I think you can see it, but maybe it’s just me.

I am just finishing the antibiotics for the cyst that I have. My knees are not cooperating (I know what else is new on that front). My neck has really been bothering me, even more than normal I see the doctor in 2 weeks to schedule surgery. My back is bothering me and today I have a migraine. Oh yeah I am just loving life today!

My neighbor came over to chat and commented that I looked tired, and I know I do, I feel tired. I have been randomly falling asleep at the computer again, I will lose time which is always disconcerting. I think this is playing into my neck bothering me more than normal. I have found myself in odd angles which I’m sure isn’t healthy for my neck. I have checked my CPAP read outs every morning and most mornings they are decent and I’m sure that most sleep apnea patients would be pleased with mine, but something is just not right. I don’t know what is going on with me, but something is wrong.

I go in for thyroid re-check and potassium re-check tomorrow and maybe something in the blood work will help clue the doctors in. I am so tired of feeling crappy and hurting. I feel like I am losing a battle I didn’t sign up to fight. Of course that is the joy of having an autoimmune disease, you are literally battling yourself. Your body has decided to go to war with itself and destroy some piece of itself and you are stuck on both sides.