As a blog that I started to keep track of my own battle against a chronic illness and as a way to bring awareness to Intracranial Hypertension, some have asked why I wrote my last post about the things my sister taught me. There were two reasons actually. One of those reasons is because she will never be forgotten and I felt it was important to honor her life by writing about her here for all to see. The most important reason, however, was in response to a post that another chronically ill patient suffering from Intracranial Hypertension had posted. This person was feeling rather down about her day to day battles against this illness, and in her desperation felt that she had nothing left to live for. She could not imagine anything worse than the daily pain she was experiencing, the things in life she had given up, the burden she was placing on her family and the agony of the treatments she had to endure in an effort to just feel normal. After reading her post, I knew I had to do something. Intracranial Hypertension is horrible...but there are things that are worse. Losing someone to cancer is worse. Battling cancer is worse. Having a life that is only half of the life you were born to live is better than having no life at all. So, I wrote my sister's story as an inspiration to those battling a chronic illness to remember to count the blessings you do have. To thank God that you have arms to hold your children and words to tell them you love them. To thank God that while you may be bedridden in pain...you are still here and will still be here tomorrow.
Lately, I have been battling my own inner demons. Since I last wrote, my doctors placed me back on Diamox. I can't really say whether the medication ever truly helped. I did lose some weight on the drug, but continued to suffer from fatigue and low back pain and pressure. My doctor had given me Dilaudid (a narcotic) to help with the daily pain, but without it I couldn't function. When I had last seen her in late August she had given me a prescription for the Dilaudid, but I wouldn't be able to get back in to see her until May of 2010 due to overbooking. I was placed on a cancellation list. By late September, I had run out of the pain medicine and was suffering from insomnia on top of the back pain. My doctor had gone to Scotland and would be out of town for the next week. I finally called my PCP to get a script. I was told often to go to the ER, but the copay for each ER visit is $100 and we still owe on previous visits. Over the last couple of weeks, the low back pain and pressure turned into head pain and pressure. My jaw in particular became inflamed and I could barely talk let alone eat. After fighting with my doctors office I finally got in for a lumbar puncture this past Monday. Typically, my husband is allowed in to hold my hand during these procedures but, this time he was not.
I laid nervously on my side in a tight fetal position, with my butt exposed for a period of 15 minutes of so, while the nurse and doctor prepared all of the equipment. They spoke to each other about things going on in their lives as if I weren't even there. For them this was just another day and another procedure, for me, this was the 6th or 7th LP I'd had done since March and I was terrified. I knew what was to come, and it never got any easier. First she rubbed my back down with the brown Iodine solution to keep the area clean and palpitated the area to find the "right spot". Then she said, "Your going to feel a little sting and some pressure as I put in the anesthetic." And, I did. The pain from the needle going into my spine was painful and the pressure intense. My body began to shake uncontrollably. Then...there was another. It is rare that you only have one shot of anesthetic. Sometimes it takes two or three. Now, it was time for the puncture. As the needle went in I felt an incredible amount of pressure. Lying there you think, "If she hits the wrong way, I could be paralyzed for life. If she does this wrong, I could end up with a severe infection. Or, if she goes in at the wrong angle this could be very pain...."; Just then she hit a nerve and pain radiated from my spine clear down my left leg. I moaned out in pain and she stopped. She tried again and I got the same result. Finally, she stopped and just let the fluid drip out....slowly. She left the needle in for nearly 25 minutes, while my body trembled before she finally decided to try to move it once more to get a faster drip. It worked. My opening pressure was 30 and after taking off fluid my closing pressure was 16. Normal readings are between 8 and 15 so, my pressure was definitely high. When she was finished I asked her if we now should consider a shunt as the medications weren't working. She said she didn't think I was a good candidate for a shunt and instead was referring me to a pain psychologist to discuss my feelings about my "loss of life" due to this chronic illness. In that instant, it became clear to me that my doctor had given up on me.
I came home feeling defeated. For the next two nights I would be up crying in both emotional and physical pain. My back was hurting so much I couldn't sleep and I felt as though my doctor was telling me that I had to face the fact that I would live like this for the rest of my life. My husband slept on the couch because he didn't want to disturb me....but, I needed him. I needed a shoulder to cry on. The puncture was on Monday and today is Friday. I have been in bed all week. When I am upright for any length of time, my head is in pain as well as my back. I have no doubt that some damage was done to my back during the puncture, but only time will tell. As for my head....well, I now have a spinal headache. I am trying to give that time too, as I have had a blood patch before and I don't want to ever have another one. For those of you who don't know what a blood patch is, it is when they take blood from another part of your body....i.e. your arm, and place that blood in the spinal puncture site by doing another lumbar puncture. That blood is used to clot up any cerebral spinal fluid leak. The problem is that they are putting the blood into a space where no space exists....so the area is stretched and it is very painful. So, I'm trying to wait this out.
As for pressure lowering medications....I'm not currently on any. My doctor wants to see how I do in the next few months. My pressures will go back up, undoubtedly...but, there will be nothing other than more lumbar punctures to treat my condition. I could feel hopless right now. I could throw in the towel. But, I have learned the lessons my sister taught me. In many ways I am alone, misunderstood, and may not have a bright future ahead....but, I have many blessings and I'm not willing to give up.
I have scheduled an appointment with two outstanding doctors in Columbus, OH to discuss possibly getting a shunt. Hopefully, they won't give up on me as my doctor here has. I hope.