Tag Archives: physical therapy

Recovery is like a cha-cha

Recovery is like a cha-cha you take lots of steps forward and then you go back. So I had been making progress with my neck. The imaging actually looked so well that I don’t need any more imaging on my neck right now. It’s healing properly! It’s fusing the way it’s supposed to, which is such a blessing! I was so glad to hear that after all the headaches with my back (more on that in a minute). I have had so much radiation from x-rays, cat scans and MRIs over the last 4-6 years that the doctors are getting concerned because I am young. So the neurosurgeon in January decided to only do a cat scan of my back, that my neck looked stable.

So we did a cat scan of my back and this time there is enough bone growth to consider me stable. It still has not fully fused (which is highly frustrating, but I’ll take what I can get) but there is enough bone growth that I am out of the woods finally. The hardware is stable, and they don’t feel like it will break off. There is some peace about that. When people talk about metal fatigue and how it could break and puncture you, it is a little disconcerting. However with my history I figure that’s the least of my concerns!

So the real problem I am having is with my shoulder. I think that when both of my arms were totally numb I possibly tore my rotator cuff. I didn’t know any better because I had no feeling and now that I have feeling back, it has been bothering me since about October last year. We have also been doing physical therapy on it since October last year. I will get better for a bit and then it gets worse again. So this past week it has gotten a lot worse for no apparent reason and I finally have broken down and made an appointment with the orthopedic doctor.

The neurosurgeon doctor and the physical therapy doctor both agree it’s time to see the orthopedic doctor about my shoulder. So we will see what he says, of course I could be wrong and it could be something totally different. I just want to get to the bottom of it and find out so we can fix it. I just hope I don’t have to have surgery, but this having surgery every year is getting VERY OLD! I stopped wishing for no surgeries because I have learned that is just asking for a surgery to happen, so I am just going to go with the flow and see what happens. All is well no matter what!

Blood thinning

So after genetic testing came back positive it’s looking like I will be on blood thinners for the foreseeable future. I am working closely with my hematologist to stay on the best course of action for me with everything. The emergency surgery from December has also pushed back the removal of my IVC filter for a few more months, but I know that will happen when it’s supposed to. I was hoping it would be out already, but everything happens when it’s supposed to and I have faith that I am protected just like in December.

I also had blood work to check all my levels to make sure that things have returned to normal. We felt it would be good to re-check my iron, vitamin, and blood volume. After everything it’s good to make sure no more surprises. I mean birthday surprises are good, anemia, not so much! I have been feeling really run down still which is what we have been concerned about, but that isn’t really anything too new.

My shoulder has been bothering me more so we have been doing more physical therapy exercises to try and strengthen it. I am hoping that will help so I have less pain in it. My knee popped really loud so I’ve been upping my knee rehab at home too hoping that helps, I am also going to get new knee braces soon. That hopefully will help soon. The good part of losing weight is that they are big, the bad part is that they are big.

It will be good. On wards and upwards. ALL IS WELL!

Who’s not ready for fall?

I used to love the changing of the leaves, the cooler temperatures. I mean there is some real beauty watching the leaves cascade down…now I see them and I think fall hazard..they get wet, I’m going to slip! I’m constantly watching for branches, leaves, pine cones, acorns, etc. Everything has now become this natural obstacle course that I didn’t train for! I mean who thought I looked like I wanted to compete in some Ironman? I did not sign up for this! I mean I can barely walk to the car on a good day! (Okay maaybe that’s a bit of an exaggeration, but there have been days that I have tripped over my own two feet!)

So the wifey is planning on going roller skating this week and I was telling the physical therapist this and he looks at me and I go no I am not going with her, and he gives this huge like HUGE sigh of relief. I laugh and go hey I know my limitations I barely walk without hurting myself! He laughed and asked if I was always this accident prone and I go NO! I actually did several sports as a child! Gymnastics, soccer and swimming to be exact! He was a bit surprised I think. I’ve just become the world’s biggest klutz as an adult!

So with fall comes the cooler temperatures which means the hardware in my back is starting to hurt. This is the part of the year I dislike. I also have lost the weight so I don’t have as much insulation! Actually that part is a good thing, and I’m glad for that part! I am pulling out all my sweaters and hoodies which are now about 3 sizes too big for me, but they are sweaters and hoodies and it doesn’t really matter if they are 3 sizes too big for me. We are in the process of buying me a new winter coat however because that is 2 sizes too big for me and it looks rather ridiculous, so we’re going to fix that situation. I have jackets that are the right size, or at least only a size too big, but the winter coat definitely need an upgrade.

So I am going to sit over here sipping on hot cocoa and wearing my hoodies and sitting under my blanket that I pulled out of storage because that’s what I do when it starts to get cold again, I bundle up because I’m always cold! They laugh at physical therapy because I usually have about three layers on and I have to undress before my appointments because I only need one layer to do my exercises. But hey I admit I am cold, I take no shame in that!

When your whole life revolves around illness

So wifey and I were discussing that we use all my major medical events (surgeries, saddle pulmonary embolism, major tests, etc) as a timeline for our life. We then remember everything else have done around those events. I looked at her with squinted eyes and said that’s sort of sad….I mean it is what it is, but to think how much of our lives revolve around illness and surgeries is depressing!

I am optimistic that the future will not be like this. I cannot go back and change the past, it is what it is, but the future I am hopeful will not be like this. However I also know that I have several chronic conditions and the future may also entail some more surgeries (I am hoping some space between them and not so back to back), and some more medical procedures, but it’s the attitude you take with life that predicts the outcome.

We try really hard to be happy, joyous and free. That is not an easy task around here at times. I get grumpy, I am often sore and in pain from the time I wake to the time I go to bed. Everything hurts, sitting hurts, standing hurts, lying down hurts. I have headaches, backaches, my hip hurts, etc. I can only do so much for the pain, but I am trying. I try to remember each day to be grateful and I think of five things that I am grateful for even if they might be small, but five things. Put myself in a more positive mind set and start my day in the right mind frame and things seem to go better.

I also sometimes in the middle of the day will do the same thing because I’m stressed out because of this or that and I need to re-focus my day. I might look up silly pictures, or jokes or stories to help because I know it’s okay that I hurt but I don’t want to get stuck in that grumpy mood. I don’t want to get stuck in the everything sucks attitude. I try really hard to take a deep breath and focus on the positive which some days is definitely easier than others.

As my neck has been healing the headaches are starting to come back which is highly annoying, but I have been taking a deep breath and massaging the base of my skull to release some of the pressure. I have gotten some new physical therapy exercises to do at home to release some of the tension in my neck and shoulders which seems to be helping as well. I am glad to be getting more home exercises so I have more to choose from, I have been switching between the back, knees and neck. I really feel like I need to make up a song similar to “Head, Shoulder, Knees and Toes” for my exercises…it might happen.

I just keep reminding myself that 10 years from now I will look back and this will feel like a short time in my life, a small blip on the radar, right now it feels like forever, but when you look back it won’t. So often when we are going through something it feels like a lifetime because we don’t know when it will end, but then we get to the end and we realize it wasn’t as bad as we thought it was going to be. Well in my case I almost died and outside of dying I don’t think you can get any worse..but you get my drift! So the moral of the story is when you are going through a rough time try to look for the positives, they are in there, somewhere. They might be hidden, they might be small, but they are in there. It’s okay to cry, it’s okay to get depressed, but don’t get stuck. Realize that there is an end and you will get through it. Even if the condition is a chronic illness you will learn how to manage it, you will be stronger and better equipped to manage it, and you will be a warrior.

 

Are your listening ears on?

One of my biggest pet peeves is when a doctor or other medical professional is not listening to me. I know time is limited and I do my best to give you the pertinent information to you, so you need to listen to me. Last year a doctor did not run a blood test on me and missed a major diagnosis. I got really sick because the doctor didn’t listen. So when I had this one guy not listen and thought it was cute that I kept harping that he wasn’t listening, I laid down the law last week. I told him about the major diagnosis that was missed and how serious it was. I explained that he thinks its cute that I harp that he doesn’t listen, but for me it could have been a difference between life and death and I’m not exaggerating.

So his boss called me a ball buster because I was giving him a hard time yet again, and I owned it! Yes, I will give you a hard time yet again! Plus his boss was who I am there to see anyhow. I know that I have a LENGTHY medical file/history so I try to keep it as short as possible which isn’t always easy. I really do try to keep things on point, but unfortunately with me one thing is connected to another.

Crazy

Why be normal? I mean normal is overrated right? This week has been a lot of crazy feelings and wanting to jump through the phone. There has been a lot of turmoil from one person not doing what they said they were going to do 3 weeks ago and it blew up in my face this week. So I spent the majority of this week scrambling to try and get it fixed.

Of course on the upside of my week Mom took me clothes shopping last week and I got to wear shirts that actually fit and that made me feel good. I have been losing so much weight that the clothes that I currently own are getting bigger and bigger on me. Mom told me it was time to get some shirts that fit so we can start donating the biggest clothes again. I had already dumped my closet of one size and soon I will be ready to do another dump. I am down about 120lbs. I am feeling proud of my accomplishment. I am over halfway to my goal weight that was recently given to me by my doctor.

I just wish my pain levels would go down, even a little! That first year the stupid doctor who will not be named blamed my weight for my pain, well guess what doc? I’m a lot lighter and I am still in pain. It’s also fall which means the temperatures are going to start dropping and while I welcome the cooler temperatures I remember how my hardware didn’t like the cold last year!

I am working hard in physical therapy to build up my muscles as I continue to lose the weight so I know that I have a healthy body. I am eating healthier, drinking lots of water and taking care of me. Next month we are going to look into doing the genetic testing for blood clots and hopefully find out if I have a genetic disposition for blood clots which several of my doctors and myself believe I do. While that’s not the best thing in the world I would rather know for sure than guess. Having a massive blood clot was one of the scariest moments in my life and I just want to know if that could happen again. Of course just because I have a disorder doesn’t mean it would happen again, it just means there is the possibility. Also knowing we can take different precautions so the likelihood of a repeat is less.

When you have so many major medical problems its about knowledge and prevention. You come to understand that things in life are uncertain and you do your best to prevent what you know could happen. You don’t stop living your life, you just make subtle changes to try and prevent things. I stopped eating high vitamin K foods while I’m on the blood thinners because it makes life easier right now. Once I’m off blood thinners I probably will be more aware of how I eat high vitamin K foods knowing they thicken the blood.

Life is short. This morning we were laughing and giggle and I was thinking about how 3 years ago we were getting ready to be married. Now wifey is stuck with me and has stood by my side through all this stuff. She’s a good egg. I’m blessed. We have a good life. It’s crazy, it’s silly and it’s full of laughs.

Smiling through the pain

How can you still be smiling? How can anyone possibly smile when they are in that much pain? Maybe you aren’t really in as much pain as you say you are! Oh trust and believe I am! When your body is basically breaking down you have two choices stay on the pity pot or jump off and try to make the best of a crappy situation. I choose the latter. Trust me waking up every morning and putting knee braces on is not my first choice. Waking up and putting on knee braces and switching from a soft neck brace to a hard neck brace is REALLY not my first choice right now, but it is my life. I can either suit up and show up or I can hide and be all poor me. Suiting up and showing up means I can see my niece and hear her giggle and see her zoom around the living room in that dress she pulled out of the dress up box. See my nephew giggle as he tries to steal his sister’s cookie while she’s not looking. Suiting up and showing up means I get to spend time with my brother and talk about why worm holes and Dr. Who actually make perfect sense and why the 10th Doctor is better than the 9th.

Suiting up and showing up means that I ¬†go to physical therapy and do the stupid squats that I hate to make my legs stronger so that maybe I won’t fall next time. Suiting up and showing up means that I get to have dinner with the whole family and laugh about this or that story that I had forgotten about until someone brought it back up from the family archives. Suiting up and showing up means I hear the prognosis and treatment plan from the specialists even when I wish it was better news. Even when I wanted better results.

I know I joke and laugh and smile more than people might expect, but that’s how I deal with the pain. Just because I’m laughing and smiling doesn’t mean I’m pain free it means that I am trying to do everything I can to fight the pain. I get tired easily; much easier than even I want to admit. I just have to honor my limitations and keep working on what I can fix and accept the things I cannot change at this point. It’s a bitter pill to sallow at my age, but I know things could be worse. I am going to keep on moving upwards and onwards! You have to keep a positive attitude or else all the negative will eat you from the inside. You cannot let all the bad things get to you or you will sit on that pity pot until you no longer exist and who wants that? NOT I! I would rather suit up and show up and enjoy life with limitations than miss out on all the joy life brings me!