I know I just recently blogged the other night, but I already have more news to share. So instead of bottling everything up, I really wanted to share it all and in this way it wouldn’t also turn into a HUGE blog too. I am also really nervous about all that is going on, so I figured that this might serve as an outlet to share my feelings and feel better.
To begin with, I have been having severe pain in my knee and thigh, especially when getting up and down. I couldn’t walk, or even extend or flex the knee. I was getting sharp, catching sensation with range of motion of the knee, especially on first arising. It was getting to the point that I needed help just getting up and down off a chair because of the excruciating pain. Being so hypersensitive and in so much pain as it is because of my illness, this was extremely magnified and affecting me so much more than a regular person. It was also exacerbating my overall disease and autonomic dysfunction.
I went to the Orthopedist the other day because I couldn’t tolerate the pain anymore and the orthopedist wasn’t sure exactly what the cause was. He did discover that I had a saclike bubble pouch above my knee, which he said was probably a nerve exposed. He did however give me a cortisone shot to try to help me, but he did say that “all bets were off with me” because my disease really complicates matters and you never know what to expect with it. In addition, he also alerted me that not only could the injection not work, but it could also make things worse. However, I thought that I really had nothing to lose because I was in such excruciating pain and if I didn’t do it, I would always wonder if it would have worked or not and therefore, I went for the injection. However, not only did the injection not work and exacerbated my illness like the doctor said might be a possibility because any trauma to my body (and a needlestick is definitely traumatic) can cause exacerbation of my illness, but I ended up having a bad reaction as well. My blood pressure ended up dropping and my autonomic dysfunction was stirred up. As a result, the doctor made me lie down for a bit.
Anyway, since nothing was solved when I went to this doctor, I went to another doctor to seek his the expertise and it was discovered that I was getting the pain that I was getting because of the severe osteoarthritis that I had, as well as having tendonitis with the Vastus Medialis and Suprapatellar Bursitis. I can’t believe that the orthopedist missed this. Not only do I have severe osteoarthritis in the knee, but also trigger points in the Vastus Medialis can definitely refer pain into the knee. After all, the Vastus Medialis muscle is often a major factor because when it’s weak it can’t hold the patella (knee cap) in its proper alignment. It is one of the four quad muscles in the thigh that are the primary extensors of the lower extremity at the knee.
I can’t believe that they misdiagnosed suffering from Suprapatellar bursitis because I was having pain in the anterior knee above the patella that was radiating superiorly into the distal anterior thigh. I couldn’t walk or go extend or flex or the leg. I was getting sharp, catching sensation with range of motion of the knee, especially on first arising. I can’t believe how you figured it out in a second and you didn’t even see me. You are simply amazing. These doctors are something else. They just find it so easy to blame it on something else… especially my illness. They don’t realize that the supra patellar bursa may also concurrently become inflamed with dysfunction of the quadriceps tend, and anything that alters the normal biomechanics of he knee can result in inflammation of the supra patellar bursa (so it is no wonder that problems with this muscle is causing the bursa to occur). O yeah… they also think that I possibly can have something wrong with the Obturator Nerve as well because of the pain I am experiencing and how I always feel pain in my femoral artery and feel like there is a clot there as well. Never a dull moment… you should know that by now!
So now that this issue has been discovered, the next problem is that we have to find a way of treating it. I am planning on having a trigger point injection when I go for the next ketamine coma on Tuesday because I really can’t tolerate anything touching my left leg whatsoever unless I am completely knocked out. I am really hoping that this will work because I am just in so much pain but I am so happy that they finally found out what is wrong.
I am also going to the doctor tomorrow because the doctors are extremely worried about my left foot and when the soup can fell on it. Even though it is black, they are not sure how much it is ‘black’ because of my illness and how much is due to the actual trauma and something else causing it. Not only is it discolored, but also there is a blister-like look to the foot (but it doesn’t appear to be a ‘water’ blister). We aren’t sure how much of what is occurring such as what is is related to my disease, how much is bruised, and how much there is something else going on.
The doctors are always afraid that with my disease and poor circulation that I am going to have my leg amputated because they said that I could easily get an infection in that leg and foot due to the poor circulation and everything. The doctors have even stated that if I got better that they might still have to ‘amputate’ because they fear that due to all this time of having the foot and leg deprived of oxygen, a lot of the tissue has already died. So they are especially worried about this foot and want to see what is going on before it is too late.
In addition, due to my illness, nothing ever presents itself like it should. After speaking to the doctor, they are very worried that it could be a fracture blister. I don’t know what they are going to be able to do or anything because of my illness, and that is one of the reasons I didn’t go to the doctor initially when it happened (they can’t really do anything for broken toes in general and they can’t immobilize the toe or put a bandage on it either because of my illness… so all bets are off as to what is going to happen). But the doctor is extremely concerned with all that is happening with the foot and meeting me first thing in the morning to see what is going on.
Fracture blisters are very uncommon and are a big complication. It is a huge dilemma for doctors in general, but with someone in my condition, it is even worse. These blisters are thought to be caused by shearing forces applied at the time of injury. I am so worried about it because they mentioned that surgery might be needed and like I said this is on my ‘worst’ foot and I don’t heal regularly. I am so scared that this is going to lead into something worse and may lead to having my leg amputated. I am so worried that this is going to exacerbate my illness even more because my illness spreads like a wildflower and any sense of trauma easily spreads it.
To make it worse, I also have an appointment tomorrow with the surgeon for the osteonecrosis. I wonder what he is going to do. I hope that I am not going to have to have more surgery to remove more dead bone. I do know that since the last appointment with the surgeon, more dead bone has broken off and fallen off on its own. I just hope I am not going to have to endure too much pain tomorrow.
The bone doctor has also stopped the injections for my bones for awhile. I have been getting a reaction every time I have taken the injections and the doctor doesn’t want me to take them anymore until I see him. I had a reaction when I first started taking the injections in the hospital, but the doctor was hoping that within time that the reactions would subside because I desperately needed these injections because my bones are deteriorating so fast and they are so thin already. I am so prone to a life-threatening fracture and can’t afford to have one. I can’t get the usual potent infusions that I used to get, so these injections were the next best things.
However, every time I was taking the injections, I was not only getting swollen and itchy, but I was getting a ‘rush’ and palpitations in my chest. When I spoke to the doctor, he wanted me now to stop it immediately and he wants to see me when I take the next dose so that he can carefully monitor me when I do take it. He thinks that the injection is dropping my heart rate and blood pressure, so he wants to put me on all the monitors including taking an EKG the next time I take it. So since he is going on vacation next week and I am also leaving for HOPKINS, we are going to stop the injections until I get back from HOPKINS because I can’t see him beforehand. He must be really nervous because when I told him that I would still take it like every other day or something because I knew how important these injections are and I also didn’t want to lose any of the bone that the infusions did built (since this was the first time since the very first infusion that I had a significant growth of bone and I didn’t want to lose it according to my bone scan), but he said, “Under no circumstances am I to take it!”
The doctor also wants me to get a pulse ox machine and blood pressure machine for my house because he thinks that as my body continues to deteriorate and shut down, I am having issues with my heart… especially when I take injections. I never really had problems with injections in the past, but lately whenever I have an injection, I have been having a reaction. I keep getting a ‘rush’ and palpitations whenever I take an injection. It just feels like my heart is fluttery and someone is sitting on my chest. I got it when I went to the dentist and he gave me an injection of novocaine. But I thought it was just an isolated event. However, it again happened when I had the injection in my knee the other day. It then continues to happen when I take these injections. So the doctor is thinking that it is my autonomic dysfunction acting up whenever I take an injection and it is just one more way that my body is just shutting down the more my body deteriorates. My organs are really just suffering so much and I don’t know honestly how much more I can take!! I am really getting scared!!
I really am scared that I am not going to be able to make it much longer. I am trying to hang on as long as possible, but it is getting harder and harder. I am trying to keep my head above water, but I am drowning faster than ever. My dad keeps saying to me to “hang in there” and “Hopkins is going to make me all better” as a way of trying to keep me going. He even keeps telling me constantly how important I am to the family and how they can’t live without me because there will be no one to take care of them. He said that no one will take their medications because I won’t be here to give it to them (I am like the doctor in the family because I give them all their meds and such). Sometimes I wonder if he thinks that by telling me this stuff if he thinks it will prevent something from happening. I am so scared that something is going to happen. I know I am running out of time and I know how much I need treatment. I really am hoping that HOPKINS will work out for the better, but I also am aware how much I need in addition to just the treatment at HOPKINS. I also know that without the help of others… none of this will be possible because all my treatments are so incredibly expensive and my family can no longer afford it. I am just praying and hoping that something will come about and there will be a way of finding the funds so that I can receive the necessary treatment I need to save my life. I really don’t want to die because I have so much to live for. I have been robbed of so much of my life and I haven’t yet lived my life. I have so many dreams and aspirations and I really want to leave my mark in the world. I want to travel, get married, have kids, be a doctor, etc. I just hope that I get all those opportunities.
I also wanted to share some really cool news about my cat Missy. Not only is she my companion and best friend and babysitter, but she is such a smart cat as well. I never met a cat like her. She knows exactly when I am sicker than usual, as she won’t leave my side. Even when I am having an exacerbation or need help, she always finds a way of notifying my parents. She really is something else. I spend countless nights awake with her since I can’t sleep. She follows me everywhere just to make sure that I am ok. Even if I have to go to the bathroom, she will be my ‘tail’ and follow me there and then follow me back to bed. She really is my best friend.
Missy loves being with me and getting all my attention. Not only will she never leave my side, but she also spends the entire night with me. We do everything together. IF anything would ever happen to that cat, I would NEVER recover. She is my life!! We watch television together and she even loves to watch me on the computer. In fact, when I am typing on the computer, she is always by my side watching. There are even so many times that she even tries to go on the keyboard and type her own messages. She really is an amazing cat.
Missy is one of the smartest cats I know. I actually can’t believe what I am going to tell you next and my dad said he would never believe it either if it wasn’t that he actually experienced it. Missy actually ‘talks’ to me. She is very extremely vocal. Missy always wants to make sure that I am ok and if I appear that I am ‘resting’ too long, she will start ‘talking’ and such to alert me to get up and make sure nothing happened to me. It isn’t even like she is ‘meowing.’ It is totally a different kind of ‘meow.’ It is more literally like she is talking. Even when she first comes into my room to me, she has to announce her presence by ‘talking’ to me. She really is something. My dad says that she is ‘learning English!’ I never thought that Missy or any cat in that matter would be capable of doing something like this. Missy is just one amazing cat. I am so lucky to have her. She is just unbelievable.
I am going to miss Missy so much when I go to HOPKINS. Whenever I go traveling to doctors and to the hospital, I miss her so very much. She is my ‘life’ and I don’t know what I would do if I didn’t have her.
I also have a great dog too. He is so funny and keeps me company too. I just bought him a new squeaky toy because he loves to squeak things. I know he loves balls, so I bought him this toy because not only is it a ball and squeaks, but it is shaped in a bubblegum person. He loves playing with it because not only does it bounce like a ball, but it bounces in all different unexpected directions too because it has arms and legs. We had a great time playing with it today. I only wonder how long it is going to last before he kills it. Max has a habit of destroying things especially when he wants to play with something and you don’t pay attention to him. He always has to be the center of attention!
Well, tomorrow is my mom’s 60th birthday. I am so lucky that I am here to celebrate it. I really thought that I was going to be at the hosptial, but I was able to be here to celebrate it. I really wish I could have made it one big bash for her, but unfortunately due to financial constraints and because I really can’t do things physically… I really can’t do much. My mom has given up so much for me and she definitely deserves the BEST birthday possible. I only wish I could give her all of her wishes because she definitely doesn’t deserve the life she is living now. She is at the point in her life where she should be enjoying her life, relaxing, and living her life up. But instead she is working harder than ever, can’t go out to eat, can’t go on vacation, can’t buy things for herself, can’t fix up the house like she wants, etc. I feel so bad for all that I have done for her. I am so thankful and appreciative for all that my mom has done for me and given up, but I really wish I could change things for her. I wish that I could make things better for her. I would do anything to make my mom’s life better. I am so thankful for her. I can’t wait to get better so not only will my life get better, but also will my family’s life. Not only has this disease robbed me of my life, but my parents have been robbed of their lives as well. We haven’t done anything in years including going on vacation, going out to do anything fun, or even going on vacation. I can’t wait for the day when this can happen!!
In the meantime, I really tried to make my mom’s birthday as special as possible. I did buy her a plant that is supposed to bloom every year, but I definitely wish I could buy her more. Even though I can’t take her out to eat because of the finances and because I really can’t eat out, I am making her a whole big dinner. I am also planning on getting her an ice-cream cake for her birthday as well. I have some other things planned as well, but I don’t want to share it right now in case my mom looks at this before her birthday. I want her to be surprised. But I will tell you all about it next.
Well… I guess that appears to be all. I think I told you everything. Thanks again for all your continued support and encouragement. I will let you know all that happens!