Packing for the Weekend

I am leaving today for Portland, OR for a weekend trip. My husband and I are going to visit my college girlfriends. It is amazing that I can be 80% sure that I will feel well enough to get on the plane. For many years, I had to cancel trips the day that I was supposed to leave because I was too weak to travel. I can tell that my energy is improving because I actually make it to most of the places that I plan on visiting. The frustrating part of traveling with a chronic illness is that I have to bring all of my prescription drugs and supplements with me. That idea probably sounds like no big deal but when you take 14 prescription drugs, some of which are shots and IVs, the act of packing turns into an ordeal. I am only going away for two nights but I have been organizing my drugs for over two days now. I have to make sure that they have all been refilled so that I do not run out of them over the weekend. I have to pack them with the original prescriptions so that they do not get taken away from me at airport security. I can't believe how many hours it takes me just to pack all of my drugs. I am jealous that my husband can pack for our weekend trip in 15 minutes. I have been making lists about what I will need for this trip for over a week. I forgot to mention that I have to go to the store to buy more protein bars and glucose tablets just to ensure that I do not collapse due to hypoglycemia on the trip. The act of packing becomes more like the act of organizing in my head. Once I get all of my drugs organized, I feel like the extra work was completely worth it. I am just thankful to feel well enough to travel. I just wish that my life could be easier.

A Good Day

I just realized that I rarely write a post when I have a good day. If I have an outstanding day, I write. If I have a challenging day, I write. If I experience a situation that gets me fired up, I write. From now on, I would like to share with all of you my small triumphs. With Lyme disease, we have to cherish the times when a drug helps or when we feel good for a few hours. Today, I felt a burst of energy in the afternoon. It felt great!! I was able to read while I was at the infusion center and then a friend surprised me by stopping by my house. I couldn't believe it when I looked at the clock and I realized that one hour and forty minutes had flown by while we were talking. Usually after twenty minutes, I am exhausted. I constantly have to manage how I am feeling and if I am expending too much energy etc. Today, I just simply enjoyed talking to my friend. I had enough energy to forget that I am sick. I love it when that happens. After my friend left, instead of lying down to rest, I cooked dinner. I can't believe it. The IV Rocephin and IV Zithromax must be helping me. I feel so thankful to know that the drugs that I am taking are helping me. For two years, I took multiple oral antibiotics and I could never definitively tell if they were making me better. I love that I can state that I know that my drugs are helping my body heal and therefore I have more energy. This illness is so confusing on so many different levels that it is a blessing when there is a direct link between an action that we take and an outcome that we experience. I am taking IV antibiotics and they are helping me feel better. It is that simple. I don't know how I will feel tomorrow, but today was a good day.

Sick with a "normal" illness

Currently, I am sick with a "normal illness," the flu. I have not been this sick with a flu-like illness since I was 11 years old. I now realize why infants and older people are at risk of dying from the flu. What I have right now is a nasty illness. Part of me feels like I don't deserve to have the flu because I have to deal with not feeling well every day of my life anyway. No one deserves to catch the flu but for people with chronic illnesses, it just creates more suffering. The other part of me is so glad that I have something normal that other people can understand. When I tell people that I have the flu, they respond empathetically right away. They can relate to me and to my illness. Most people have had the flu at some point in their life. It is so strange for me to receive such understanding about the flu when what I deal with every day with Lyme disease is just as challenging. All of a sudden, I am part of the regular population and people respond appropriately. They don't challenge the integrity of my claim that I have the flu. It is refreshing to be able to say in one sentence why I can't come to an appointment and to have an immediate understanding. When I state that I am sick from Lyme disease, I always know that I will have to either provide all of the information about Lyme or I will have to argue the case that Lyme even exists. For those of you who are reading this post and do not have Lyme disease, imagine that you have the flu and you go into a doctor for help because you are feeling horrible and the doctor tells you that the flu doesn't exist. That is exactly how it feels to be a Lyme patient.

I Skied Today!!!!

I am in Lake Tahoe with my husband right now. We are here for a week. Since we arrived, we have spent most of the time sitting by the fire and relaxing. Well, I have been relaxing while my husband has been working. We came up here to have a change of scenery and to ski. Skiing represents health and hope for me. For the first 6 years of my illness, I could not even imagine skiing. Just thinking about putting on all of the gear was exhausting. That would have been all that I could have done during those years. In 2003, as my health improved, I skied in Zermatt, Switzerland. The act of skiing for a few days in a row was affirmation that I was claiming my life back. It thrilled me to be doing something athletic and fun again. Skiing feels like the opposite of sitting on the couch to me. Unfortunately, I relapsed in 2004 and I have not skied since until TODAY!!! We skied at Alpine Meadows in North Lake Tahoe. At first, I was so out of breath that I had to stop often. I had to stop about four times down each run to catch my breath and to let my leg muscles recover. I didn't care though. I just couldn't believe that I was on the slopes again. At one point, I just had to sit down on the slope and rest. By the end of the day, I completed 10 runs. I am exhausted and extremely out of shape but I did it. I skied! Now, I can barely move my legs so I can only imagine what I will feel like tomorrow. I know that I will spend tomorrow feeling crummy and resting on the couch but the success I had today will be worth giving up tomorrow for.