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.
I am having one of those days I expect to find my cellphone in the fridge..yup I just don’t know which end is up. I mean I keep walking into a room and then stop to think why was I walking in here in the first place…I know this is just the fibromyalgia, but geez! Brain fog is something I still have not gotten used to which I’m not sure you are supposed to, I mean I know it is part of the condition, but forgetting why you go into a room should just be a side effect of old age. I’m too young for this!
I have not been sleeping well which might be the fibromyalgia, might be my sleep conditions, might be the back issues, might be my neck, etc I have so much going on right now that it’s hard to say why I’m not sleeping, but it’s getting old. I really want to sleep more, but then I look on the cpap machine and realize I’m back to my 7.5 hours. I used to consistently get 7.5 hours, and then I was getting a little more and it was awesome, now I’m back to 7.5 hours.
So the heart rate is going up and down and I am feeling like I’m on a really bad ride that I don’t want to be on. Can someone please tell my heart that what ever carnival ride it put me on, I didn’t buy the ticket? I like the lazy river ride please not the shake them up and let them loose one! When I was a child we went to the fair and they put me on one of those rides that they spin you around and you go around in a circle I started turning green so they stopped the ride so I could get off! They knew I needed to get off before I puked!
The joys of the neurological issues is that I feel carsick all the time so that plus the dizziness from the heart issues is NOT FUN! I want a refund on this carnival I want the fun one! Next time I’m picking the field trip! I want to have fun not feel like I am going to fall over at every turn.
My hamstrings are cussing at me…they do not like me and they remind me every time I stand up to do anything. I have the knee braces back on today, the physical therapy doc had me try a different KT Tape on Monday but I didn’t like it so I took it off last night. So double knee braces today! Which my hamstrings are cussing about that too! I have muscles that I did’t realize were there! Actually the funniest part in all this is my right thigh is numb, but I feel my hamstring! It is SCREAMING with pain! I am using ice packs and the heating pad alternating trying to relive some of the pain. It is odd to know your thigh is numb to the touch, but then to get feeling from the inside.
This morning wifey accidentally woke me up at 6am. She didn’t mean to! She rolled over and that’s all she wrote! I woke up and all my night sheep were GONE! They had left the bedroom, apparently all of hers were gone too hence why she was tossing and turning. I guess we need to talk to Serta..or is it Sealy? Which one has the sheep? Whoever it is I need more sheep at night! I felt bad because I got up, I was awake and when you wake me up then I’m awake awake. She felt bad for waking me up early, but it really wasn’t anything she did per se, she just flipped over. I just felt like it wasn’t going to help her get back to sleep with me tossing and turning when I knew I wouldn’t fall back to sleep.
I am using my spinal cord stimulator a lot right now because of the change in weather its been nice and warm during the day and COLD at night, the back and forth in the temperatures means my back HURTS! My neck hurts too, but unfortunately my stimulator doesn’t go that high. My allergies are also starting to kick into high gear now that spring has sprung.
I just hope my hamstrings have recovered by tomorrow or the physical therapist is going to have to do a lot less with me!
Another big holiday today and I woke up multiple times in pain. The pollen is out in full force so the allergies are starting to kick up, I think part of that is we had the windows open to air out the house a bit yesterday. Our weirdo cat got to sit in the window sill and look outside for a bit.
She likes to look at all the birds she doesn’t get to eat for dinner…I mean she is a cat after all! She also looks at the squirrels and anything else that might go past the window. Wifey is working on making a prayer/meditation space in the office, so she was moving furniture around. I cannot help her since I have some damage to my spine and cannot lift anything. She is making progress. I know it will be awesome when it is all finished.
So we are having family over for Easter and I am tired before we even start which isn’t that usual for me. I did not sleep very well last night. Wifey and I were discussing the sleep function on the Fitbit® and I said to her I don’t want to wear one because I really don’t want to know how little I sleep. I already get the apnea report in the morning, and sometimes I cry over that. I don’t need another measure of how crappy my sleep is right now due to the pain, and fibromyalgia. I also keep cracking my neck right now which if you are just joining us my C5 and C6 are bone on bone and I am getting those fused this summer. We are waiting to get cardiac testing done and some clearances before we make surgical plans in May for the surgery. I’ve had 3 major spinal surgeries and because of my saddle pulmonary emboli in October this one is going to be a pain in the butt because now I have to have a lot more of my specialist sign off.
So today is Easter the day that the Lord rose from the dead. We celebrate eternal life. I maybe in pain today but I’m happy to be spending time with family. I enjoy spending family time, and we have an Easter bunny! Otis my 6 year old bunny, loves Easter too, I mean how could he not? BUT that being said we do recognize the true meaning of this holiday. We are thankful for time with family, we rejoice in salvation and remember why Jesus died on the cross.
I hope that everyone has a very blessed day. I hope that everyone has a low pain to pain free day (if possible).
I think internal clocks should have a snooze button! I mean you should be able to tap your butt and get an extra five minutes of sleep…or something right? I mean it works on regular clocks! So this morning my beautiful internal clock woke me up at 5 freakin’ thirty! I was like I think you missed the memo where we SPRUNG forward so in no universe does this even MAKE SENSE!! I should not be awoken THIS EARLY! This is too early for even the SUN to be up! I mean at least let the bird be THINKING of being awake before me. Nope everything was asleep, the sun, the birds it was DARK. The only thing that was awake was me and my funky breathing, I wear a mask for the sleep apnea and the mask was making a funny noise so I flipped over and adjusted it because if I was going to be awake I was NOT going to be annoyed by some cross between a whistle and a popping noise. So I flipped over tugged at my mask a bit cursed under my breath at my internal clock a BUNCH, and tried to go back to sleep.
I think my internal clock thinks this is a game because then at 6 freakin’ thirty it woke me up AGAIN, THIS time it was because my arm was asleep. So I re-positioned myself, cursed my internal clock some more because at this point I am highly annoyed that I have been awoke twice before my normal 7am and tried to go back to sleep. So then I woke up a third and final time around 7:30am which was much more acceptable to my terms and conditions as found on page 10 paragraph 3 line 4.
So I got up made some coffee which I won’t be allowed to drink for the next 2 days because I’m having cardiac testing on Wednesday and they don’t let you have caffeine 24 hours before the test! I would rant and rave about the injustness of this and have they seen me without caffeine but the answer is yes multiple times so I might as well save my breath! So I’ll do that test and then I’ll have a similar test done so I’ll have to go through this all again soon enough. Which I’m like eh whatever! It’s all good really! I need to get the answers on the crazy heartbeats so we can figure out the best treatment plan. I can survive without coffee I just choose NOT to!
Happy Pi Day!! I did not forget, I am excited! I always love Pi Day and today is Rounded Pi Day and if you don’t know what that means you are not a math nerd, but we love you anyways. Today is 3/14/16 and if you round Pi you get 3.1416 so its Rounded Pi Day. So enjoy a slice of pie in honor of Pi day!
*Circle of Life Song ques* NOOOO not that! I said Pain/Sleep Cycle guys not the Circle of life!!! *Record scratches, Pumba farts-he is a warthog afterall* Yo, Pumba take Simba and get out of here! Leave the door open too, you STINK!!
Okay now that we got the place aired out a bit! Last night I was exhausted, the good exhausted from spending time with family and the kids, but exhausted none the less. The issue when you have chronic pain is that often when you get exhausted the more you WANT to sleep the more your body said NO WAY JOSE! So I tossed and turned a lot of the night, my heart rate was running high a lot of the day (in the 140 range). My oxygen levels were decent from what I could tell. I have a feeling the cardiologist may suggest doing a halter monitor for me to get a better idea what my heart rate and oxygen levels are on a consistent basis since I’m only spot checking, and when I’m sitting I’m in a normal range, when I’m standing they are much higher for the heart rate and the oxygen levels while still normal tend to be on the lower end of normal.
So this morning at 5:30am I woke up in pain, but I didn’t want to get up. Then at 6:45am I had the all too familiar electric shock feeling on the bottom of my one foot. So I caved. I got up, I took a shower and now I’m ready for bed again. The simplest tasks are exhausting for me still. I never thought I would seriously debate do I have the energy for a shower today? Now that is a question that I frequently will ask myself. Do I really want to shower? Do I have the energy to shower? What else is on the agenda for today? I actually try to shower on days where I have nothing on the agenda because it takes so much energy.
So I took my shower combed my hair, got dressed and then thought maybe I should change back in my PJs and just climb back into bed! That sounds like a much better idea today! But the coffee was made so I decided to drink my coffee and see if I felt better after my morning cup. I may still decide to ditch real clothes and go back to bed! I am supposed to go to a meeting this morning but I’m not sure I can muster the energy. I really feel like I haven’t slept however my Sleep Apnea machine told me that I got decent sleep so that’s good news. That’s another piece of my personal puzzle often I will sleep rough because of the pain and then the sleep apnea will cause me to sleep even worse.
I changed the format of the blog a bit to try and make it easier for people to find old posts. I realized that if you are trying to find posts on specific topics it might be nice to search by keywords. Hope that helps! It was also interesting to see what I write the most about, which is more which tags I use the most. Some tags I think I needs to use more! Put it all in prospective for me!
Enjoy your day! Enjoy your cup of joe! Compliment someone today! Attitude of Gratitude goes a long way!
So for quite some time I only slept 7.5 hours. Now that wasn’t sound sleep, that wasn’t continuous sleep, but I would go to bed and I would wake up 7.5 hours from the time I went to bed. Didn’t matter what time I went to bed that’s when I would wake up (if no artificial alarm was set). So now that I am not working it seems that my internal clock has given me an extra 30 minutes since my blood clot issue. So apparently when you face off with death you get 30 extra minutes of sleep…HOWEVER I really don’t want to have to be that close to death every time I want some extra ZZZs I mean that was a really traumatic experience for my whole family for me to get a little extra rest.
So while I am really grateful that I seem to be getting 30 extra minutes of sleep yesterday I had to go to the doctor to discuss the whole Yeti in the bathtub situation and since I knew he would do blood work I didn’t make coffee so it would be fasting blood work. My appointment was early in the morning so that made it easier to fast. Well by the time I did the doctor’s appointment and got the blood work and then ate brunch it was too late for a cup of joe and not thinking about that I hadn’t had my daily dose of caffeine I had lemonade with lunch. I don’t drink soda because it taste funny because of one of the medications I am on, however if I had been thinking about the lack of caffeine in my life I would have drank a small amount of caffeinated soda just to give myself something and then drank the lemonade. I had thought about drinking tea, but due to the blood thinners I have to be careful about drinking green tea.
So much of my life right now is dictated by medical conditions and medication. I can’t eat this because of medication, I can’t do this because of medical condition but it doesn’t get me down..well most days! I really do try and focus on the positives. I try and focus on the stuff I still can do. I try and focus on the stuff I can change. I think of the Serenity Prayer
God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
I can accept that there are a lot of medical issues going on right now, I am working on losing weight to help improve my health (changing what I can), I am taking the medicines to help control the symptoms and going to all the medical appointments and know that I am not a doctor…not even on TV.