So I was cleaning out some boxes and I found some old blood work and lo and behold I was tested for Factor V about 10 years ago. Did I remember this? NOPE! Apparently my doctor felt I might have a blood clot disorder. Was he on the right track? Absolutely! Did he do enough testing? No, was this his fault? Absolutely not! The clotting disorder I have is not routinely tested for. Had I remembered that I had been tested for Factor V this would have really helped the doctors back when I had my massive blood clot, but such is life.
So my filter was removed, the allergic reaction has healed, but I still have some research to do on why I had the reaction. Got to love allergies! You got to take life one day at a time!
I was trying to be more active, and in return for trying to be active my pain level started increasing. My hips started hurting, so I ended up being benched! So much for trying to be more active!
I also am finding that with my new weight loss…my knee braces are getting too big again….yes..I just got new braces and these are already too big…oops! So I might need to get new ones again which is a good/bad problem to have!
Life is always an adventure so set sail and enjoy the ride!
Okay fess up who doesn’t like a good NAP? I mean I really think the Spanish have it right with siestas in the afternoon! Take a nap go back to work, you feel refreshed! As a child I stopped napping at 6 months which my poor Mom had to put up with, as an adult I take a nap about everyday now…I think I am making up for lost time…sorry Mom! My Mom really is a saint! She takes me to my appointments, helps with taking me to do odd errands like going to the bank, post office etc. When she jokes about that I am her full time job she’s not kidding!
I am really grateful for my Mom and how much help she has been these last couple of years with getting me to these appointments. I don’t know where I would be without her. It’s been nice to spend some extra time with her. Of course when we spend all this extra time it doesn’t feel like quality time because its always around medical appointments. I am seeing this doctor or that doctor, I’m getting this or that test run. So every once in awhile she and I will pick a day and just go out. We’ll spend some quality time together that is not around some medical appointment or procedure.
I know that my whole life is not going to be based around doctor visits and medical testing but right now that’s what it feels like and it’s exhausting! I have all these pills to take, all these blood draws and tests plus physical therapy. I’m always at this doctor or that’s office for some sort of check up. I have this test or that test coming up. My calendar is already filling up for December and we haven’t even hit September yet… life of anyone with a chronic illness!
So I had a horrible reaction to the steri strips the surgeon used to close my incision, so yesterday I called and the nurse told me to carefully remove the steri strips. I started taking benedryl and this morning my skin looked a LOT better already! So I am hoping that another day of benedryl will make my skin start looking more pale looking (aka normal) verses the fire engine red it looks now. Of course once it starts calming down I’ll have to put some antibiotic cream where my skin pulled off with the steri strip.
So the good news in all of this is the incision itself looks awesome! It is nice and closed and should finish healing nicely! I just wish I didn’t have the allergic reaction on top of it! I also am going to tell the surgeon no more steri strips because this reaction was so bad this year that if there are any more surgeries we’re going to have to think of something else.
Besides the allergic reaction healing is going pretty well. I am trying to get used to how my throat feels, the first few days I felt like I had a lump in it, as the swelling as gone down the lump as gotten smaller! The biggest challenge is not to try and look DOWN! You never think about how much you look down until you can’t!
I was talking with Mom about all the metal in my body now and I am racking up quite the list! Every time they ask I start at the head and make my way down and the nurse has to write fast to keep up with me! That is the life with chronic illness! I have to start with the head and move down or else I will forget something, I find that is the easiest way for me to remember everything. I was going over everything and my mother in law told my wife that I am almost as bad as my father in law!
I just keep reminding myself to take life one day at a time. I keep taking one challenge at a time. I just have to keep the big picture in mind. I think life gives you challenges and you just have to roll with the punches and tell jokes.
So the neck brace isn’t so bad. I am switching between a hard collar and a soft collar and the hardest part is remembering to keep my head still. You don’t realize how much you nod yes or shake no until you aren’t supposed to do it! Then it becomes really obvious really fast. Also sitting up straight has been a pain! Here again you don’t realize how much you bend your neck until you aren’t allowed to! It’s all those little things!
So I took a shower and changed the outside dressing and boy am I having a reaction to the steri strips! OH MY! So we know every year that I am going to have an allergic reaction to the steri strips but this year is the worse! It is really angry looking and weeping and even I want to hide from it! So I will have to call Monday to get some steroids to take to clear it up because it itches SOO BAD! Which the hard part is not to scratch it! At least I know exactly what is going on and know its just an allergic reaction.
I think I have mentioned before that I am super allergic to Lysol™ like I go into anaphylaxis allergic. The first time I remember having a serious reaction I was in high school and one of the guys in band sprayed some Lysol™ on some equipment and my eye swelled shut! The next time I had breathing problems and ever since especially with the aerosol varieties I have immediate breathing problems that can get pretty severe. So I use other cleaning products.
That being said I don’t expect people around me to use other cleaning products but my friends are aware of my allergy because it is so severe. My doctors offices are also aware of it because it is so severe. I also had to let my university know because they had cans of it in the bathrooms and people would spray it and one time I had an asthma attack in the middle of class because I used the bathroom and someone sprayed it while I was in the bathroom. Thankfully I was not near the person or else I would have had to go to the hospital that time, it was a close call!
So when someone wants to use Lysol™ I leave. I will not jeopardize my health for it. It’s nothing against the person, I just remove myself. Tonight I was sitting watching a show with my friend and another friend got up and was straightening up. All the sudden I SMELL IT. I smell that all too familiar smell, so I look over to the counter and my enemy sits with the top wide open, so I get up tell my friends good bye and leave.
I get outside and the coughing begins. I coughed and coughed and thought this is why I hate that crap. I did make it the short walk home, and then I made it to the bathroom (I was afraid I would vomit. Often after a violent coughing spell I vomit). I was able to calm down and so far so good, and I am thankful it was just the wipes. The wipes don’t tend to have as bad an effect as the sprays do.
So now I stay up a bit to make sure my lungs are recovered before going to bed because it’s late. At least I had seen the show so I know how it ends.
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).