Every Little Step

It started when I was 17. I remember it like it was yesterday. The week after Thanksgiving, my life changed forever. Wait, let me back up. For about a week and a half before this life altering experience, my body gave me signs. I was feeling young, invincible, and was naive, so I didn't know what they meant. My lower back was hurting waaaay more normal than I think was normal for someone who never experienced any type of body trauma, my left leg kept feeling like I was about to get a Charlie horse then my body decided nevermind and I just wasn't feeling like "myself."

Now, on to my testimony. My mom and I still lived in our three level family house in Washington, DC. The house was pretty spacious — 21 steps to the top level. I was coming from the kitchen, running, and all of a sudden I started slowing down and by the time I reached the top step, which was where the door to my mom's bedroom was — I couldn't move. Literally, it felt as if my foot was glued to the floor. You know how on cartoon characters pour glue on the floor to throw off a chase and the other character comes running through and they get stuck in that one spot? You see them doing EVERYTHING that they can to get unstuck and NOTHING works. That was me. My mom thought I was joking as I called out to her in a panic. We played a lot, so as she neared the corner to the door and saw the panic in my face, the laughter turned to concern. She tried scooting me along then soon realized that she had to lift me. My left leg was dragging and I could not move it, not even the few feet that I needed to to reach her room. So her at 5'7 and about 115 pounds lifted me (at 5'5 and about 145) up and carried me to her bed.

I still am not sure what happened over the next day. I don't know if she was scared and trying to wait it out or if she knew what was going on and tried to play it cool, however, after the next day basically came and went with me still not being able to move, she had to do something. She made a phone call and next thing my godfather and our close family friend — also, still neighbor at the time, lifted me and took me down the steps and drove to an( inner city) hospital. I would love to say their name, but I won't. I have never been back there since. By then it was a weekend and the staff appeared to not want to be there or too tired to care. I'm not sure where the doctors were, however the nurses and assistants kept coming in and trying to cover and perform things that were clearly out of their knowledge base. They kept having me bend my left leg to test flexibility, which in retrospect literally could have killed me (I'll get to that in a minute) and they kept trying to look into my vajayjay without instruments. Did I mention that my leg was now significantly swollen and almost beet red. I'm medium brown-skinned, so imagine a red leg. Red flag anyone? What were they looking for and why? Then after what seemed like a few hours, they come in and inform me that the test they performed to see if I had what they suspected to be a blood clot — the venous doppler — was not performed on the weekend.

I now realize how lucky I was that nothing happened to me and that I also may have had a pretty good malpractice case on my my hands. Oh well. How is a hospital not full service just because it's the weekend? They informed my mother and I that they could put me up in a room and then perform the test the following Tuesday. I would just be borrowing the room. They couldn't really treat me or give me any meds until they knew what was wrong. At this point, tears were streaming down my face from all of this forced leg movement and my mom started crying too from seeing me in so much agony. She went and gathered my extended family from the living room and informed the hospital staff that their service was BS and that she would take me home and give me her pain pills. Hey, it may not have been the best course of action, however she had enough and I think she was afraid that another hospital would do the same thing. (Please now understand that it is NOT okay for a hospital to not have testing available on the weekend or to refuse service or care in essence). So back home and up the stairs I went...

Monday morning, my mom called an ambulance and this time we ended up at Providence Hospital, which is also coincidentally where I was born. I was given the venous doppler and diagnosed with — you guessed it — a blood clot and admitted. I was immediately started on low weight molecular Heparin, pain pills and twice daily blood tests. My best friend snuck McDonald's in to me every morning on her way to work (because hospital food sucks) and I had friends dropping off books and magazines, well wishes, and flowers. A little more than a week later, I was discharged with very little understanding of what happened, a list of instructions, and a referral to see a hematologist — a blood disorder specialist. I also had to start physical therapy, because after being off of my feet for so long, using crutches and not being allowed to even walk to use the bathroom, my muscles started to atrophy and I couldn't walk on my left foot. It felt as if it was shorter than my right leg when I tried to put pressure on it. A month-and-a-half later, I was somewhat starting to feel like my old self, but not.

I was walking and although I couldn't walk limitlessly and so carefree as I had before, I was able to get out and take brief walks with the break of spring. I just put on my trusty compression stocking and off I'd go.

I started seeing the hematologist biweekly and he tried to get me to comply. I was young, ignorant to how lucky I truly was after that incident, and stubborn. I took my meds (when I remembered) didn't wear the right shoes and didn't know when to say when.

I didn't fully recover pain wise, however; it got better. I started to do some research and understand a little more. I thought I was okay. . . .

So I'm doing good this time and I get a call from my then-boyfriend saying open the door. I stumble my way through my dark bedroom and hit my leg on the TV stand. I walk slowly down those 21 stairs to my front door...

A couple of weeks later:

I had a routine appointment with my hematologist two days before my aunt's retirement party, which was going to be thrown at my house. I had been feeling a little tired and out of breath running up and down those 21 steps and 17 from the basement to the kitchen, however; I just chalked it up to maybe being a little out of shape. So he is listening to my heartbeat and his face changes. He stops suddenly and I notice a look of concern on his face. I ask what's wrong and he will not answer. He just says that he is admitting me to the hospital. He was located in the Physican's Office Building, so he calls over to the hospital to tell them to prep a room for me. Still not telling me anything and someone arrives with a wheelchair ready to take me to a room. I am telling him that whatever it is has to wait, because my aunt's party is in a few days and I have to be there. He is not budging.

I get to the room and immediately call my mom. She says that the doctor already called her and then she told me why I was there. My doctor told her that I had a pulmonary embolism AND another clot in my leg. For those of you that don't know, a pulmonary embolism is referring to having blood clots in your lungs. So then he comes in and again I'm talking to him about my aunt's party. At that point, he says that I could have had a heart attack or stroke at any minute from general movement at any time and I have to start treatment immediately. Still not really grasping the magnitude of what is going on, I concede. So I do a little more research. This time I realize how important it is to take my blood thinner as directed, especially when I remembered that the lady who babysat me since I was six weeks old died when I was 12, because she had a blood clot in her leg that got a cast put on it after an accident (also now I know that is a HUGE no, no) and had a physical therapist come to her house and the clots broke off and traveled to her lungs. (I still miss her)

Fast forward four years later:

So one of my best friends is getting married and her mom is driving her crazy. Since I don't believe her, she says that every time she has to do wedding stuff, she is going to come pick me up so that I can be a witness and a buffer. She comes to pick me up almost daily and we walk a lot and do other stuff. About a week before her wedding and almost a week and a half after, every morning when I wake up I feel as if I have a charlie horse in my left leg and after I walk around a bit the feeling goes away. By this time, I'm in between doctors since my hematologist passed away, so I call my general practice doctor's nurse to voice my concern. I go in to see him and you guessed it — only this time I get a slight break and they call in a box of Lovenox (a fast acting blood thinner), needles into the pharmacy for me, and send me home, only if I promise to stay off my feet for three weeks. My friend that got married does me a solid. She is in the medical field and comes over to show me how to administer these needles to myself, since I need to do them twice a day and precision is key. . .

Lastly:

I went to a wedding in St Croix. So much was wrong with that trip, but that is another article for another time. I had to take three planes to get there and three planes to get back home. The blood thinner that I was taking at the time is really a starter pill and not meant for long term use. It can do more harm than good and there are more restrictions that are normal for any medication. Not sure how this pill was ever FDA approved. So I had to get my blood drawn weekly or biweekly, depending on my count. My numbers were supposed to always fall within a certain range and that determined my plans for the week. I did not tell my doctor about this trip, I only gave him tentative travel plans. I was supposed to have had my blood checked and I did not. I was supposed to have taken those dreaded Lovenox needles if I planned to fly and, if the flight was longer than four hours, I needed to get up and walk every half hour or so. The first flight that may have been possible, however the last two planes were so small I could barely stand up straight, let alone walk around. So factor that and also long layovers and blah blah blah and, of course, I immediately notice something is wrong when I get back home the next day. I had some needles leftover and called in additional ones and did self-treatment. Shhhh, don't tell my doctor. I'm not one to play Russian roulette, however I refused to stay in anyone's hospital again getting poked every 12 hours and not getting a good night's rest AND being subjected to not very good food. Three weeks off of my feet, a creative story to my former job for time off and I was as good as new.

After the third time, I found a new hematologist and he had fully educated me on this disorder front and back. He really knows his stuff. He answers questions and encourages me to do more research. This thing is here to stay and I now know that I have to take blood thinners for life and make sure to start taking much better care of myself. I have deep vein thrombosis or DVT and it is hereditary. It is caused from a Protein S deficiency. My mom, grandmom and great grandmom had it. It was inevitable, although those birth control pills I took for two months preceding the first occurrence (to control a very out of control menstrual cycle) sped it up. This could have happened at any time out of the blue. What if I had at some point decided to get an IUD or something longer lasting than the Pill? What if my mom never told me about this family history? There are things I realize now, like the fact that my mom retired on disability when I was in my last year of high school. How she had a very active social life and slowly but surely she became a homebody. I remember my grandmother always used a cane and wore this very unstylish brown stocking. Yet, no one ever told me.

Now I am exactly 10 years younger then my mom when she retired on disability. After exhausting my options, I had to leave my job that I had for eight years. I wear that same unstylish brown stocking. I take medicine for pain daily. I have had this issue for over 20 years now and it was fairly controlled. Pain and discomfort on most days, however manageable, and some periods of inactivity. It is now post-thrombotic syndrome and I am having to be off of my feet more and more. That is not always easy when you have 6-year-old twins and never-ending errands and grocery runs.

I spent a period of time dealing with depression. I felt as if every door I went to was closed. I had to stop doing so many things I loved, because I couldn't stand or walk for long periods of time. I really do feel the bad weather coming and sometimes I let people know ahead of time that our plans may change if I wake up and cannot walk too well that day. I had to learn to start saying no. I would still try and keep up with people and my body would pay for it later. I had to learn to start looking out for myself first. Some people got it. Some people didn't. I'm okay with losing the ones who didn't get it. I had to learn patience and what to set limits on. Having to sit out on things and reroute my path a few times showed me that I was meant to do what I thought I should be doing in life. I used to cut a rug at the club, always on the floor. I dance in my living room now when my energy permits. Those experiences were not for me. I calmed down. My story has been rewritten for me. I'm not Superwoman. Not anymore. I'm okay with taking it easy. Propping my leg up and regrouping for a day or two. No one will look out for me and my body, my health, my faith and my spirit as well as I will. They may mean well. It's okay to be selfish. It just may save your life.