huh?

Why are there so many ads about erection dysfunction and nothing about women's issues?

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huh?

Published with Blogger-droid v1.6.5

Our trip to the Bahamas

It's been a while since I've written a new post, but I'm really going to try to update more often.

My last post talked about my stay in the hospital for the relapse that started in December. I'm still not at 100% but I'm better. My hands and feet are still tingly but I'm able to use them a lot better. Because of the improvement, we were able to go on our trip to Sandals in the Bahamas that we had to postpone in February.

We flew to the Bahamas on April 14th. Our flight was at 5:10 in the morning, so we woke up at 3:00 am to be able to get the airport with time to spare. We had two stops before we arrived in Nassau - La Guardia and Charlotte. Both of our layovers were under 2 hours so we had enough time to get from gate to gate without too much stress. It was a long day but we arrived at the resort around 3:00 pm. Needless to say, I was exhausted. I was pretty much running on fumes. When we got to the resort, we were immediately handed a glass of champagne and brought to check-in. I was having trouble not spilling it (the glasses were the low & wide kind). What I did drink went straight to my head. Although my only interests at that point were food and sleep, I managed to make it to our room without falling apart. Jamie, my sweet husband, brought me to the room, got me settled, and then went to find food at one of the restaurants.

Fotunately, after a good night's sleep, I felt a lot better. And, when I say a good night's sleep, I mean 14 hrs worth. Jamie got up at 8:30 the next morning to go diving. He was really excited for diving every day. I woke up for a minute when he left, but then I slept until noon. I guess I needed it. Jamie returned from diving and we went to lunch. I was fully rested, but Jamie was pooped after his dive. So, he took a nap after lunch and I went out to lay by the pool. Of course, laying out by the pool means getting a drink from the poolside bar. Being from the Pasty White North, I was putting lots of 70 SPF sunscreen on so I wouldn't get burnt.

I think it's almost time to go to bed, so I'll update tomorrow, I promise.

We had an amazing time in the Bahamas. Jamie went diving with sharks, I swam with dolphins , we went on a booze cruise around Nassau Harbor. We met some wonderful people on the cruise -

Krystina & Sean and Emily & Eric . We are staying in touch afterwards which is cool.

We made reservations and ate in the different restaurants on the island. Bacarrat-,The Crystal Room-, Kimonos-. Great places to eat. The 7 days went by pretty quickly but we've already booked our vacation for next year. Jamaica in April. woo-hoo!

while I've been away (cont'd)

I had my first treatment of the plasmapheresis on the Saturday after I was admitted. I didn't really know what to expect. I knew that the procedure was going to be similar to dialysis using the Ash split, but that was all I knew.

I was brought down for my plasmapharesis to the unit also used for kidney dialysis. I was wheeled down there in my bed, which I was to be very thankful for later. Bill, one of the nurses, was going to be coordinating my first treatment. He attached the tubes from me to the machine and the process was started. My blood (not all of it of course) was removed and sent through the centrifuge. This process is used to exctract my plasma from my blood. Then, my blood was reinfused along with new plasma, or in this case, Albumin. My understanding is that this solution is easier to tolerate, so I was started out with this instead of plasma. Before each treatment, blood is drawn to check levels of different parts of my blood. From this, the nurses could see if the infusion plan needed to be changed a bit to include a combination of plasma and Albumin.

The first part of my infusion went relatively well. I was told to let the nurses and doctors know if I felt any tingliness around my mouth. This is a sign of low calcium. As it turns out, towards the end of my treatment, I started to feel some tingling around my mouth. I was also feeling tingling throughout my whole body, but because of the specific numbness around my mouth, I was given a calcium bolus. Unfortunately, this didn't seem to do a lot for me. I was then given a dose of Benadryl, in case of an allergic reaction. Again, this didn't have much effect on how I was feeling. I started to feel even worse. My entire body was feeling numb - my arms and legs felt heavy like I wasn't able to move anything. I was also have some difficulty breathing. Neither the hematology doctor or the nurse taking care me thought that I was having an allergic reaction, so the best solution was to wait for this feeling to end. Apparently, the change in the level of fluids in the body can have a dramatic effect on how you feel.

For about 30 - 45 minutes, I waited for this feeling to subside. It did eventually, but I was exhausted. For this reason, I was very happy that I had been transported down to dialysis in my bed. Whew! I made it through the first appointment. Now, just 4 to go. There's a rest day between each treatment, so my next appointment would be on Monday.

while I've been away

At the time of my last post, I was getting pretty discouraged about the progression of my relapse. I called my doctor and the nurse practitioner to see what was the next step. An appointment was scheduled for Tuesday to review my symptoms. When I was there, Dr. Panitch decided that I should go in for an MRI, to see if I had any active lesions on my brain or upper spine. In reviewing the films, it was discovered that I had a fairly large lesion at the top of my spine that would explain they symptoms that I had been having - the loss of feeling and use of my left arm being the most dramatic symptom.

Dr. Panitch called me on Thursday evening to tell me about the results of the MRI. He suggested that we try plasmapheresis since the steroid treatments and the IVIG hadn't worked. Antibodies are transported in the plasma, so the theory is that, by removing my plasma, the antibodies that have been attacking my nerves would be removed as well. I was admitted that night.

My understanding was that I would be admitted for a couple of days to see how I reacted to the treatment, and then be discharged to finish the remaining treatments as an outpatient. Before anything could be started, however, I had to have an Ash Split inserted into my chest for the procedures. When I was admitted on Thursday night, I was told that this would be put in early the next day. Unfortunately, I had to wait until late afternoon on Friday for this to happen. At this point it was too late to start plasmapheresis, so I would have my first treatment on Saturday morning.

I don't feel well. I really wish this would go away.

Last night, as I was getting ready to leave work, my left shoulder went into spasm. I'm pretty sure that it's due to the fact that I can't really use my left arm and the muscles are trying to compensate. I can't turn on the faucet with my left hand or even flush the toilet. My legs are getting more tingly and just walking down the stairs to the basement is exhausting. I'm getting so frustrated.

I don't know what else to say except that I just really wish this relapse would be over and done with.

Only two weeks until our trip to the Bahamas

So, I had my fifth (and final, for now) day of treatment today. It feels like my symptoms are still getting worse. I thought that I would see some improvement by now. Currently, the symptoms are as follows: my legs are always numb up to the knee, periodic spasticity in my thighs, the "MS hug"-a banding of numbness around my midsection from the bottom of my ribs all the way to the top of my thighs, tingly right hand, no use of my left arm, and some itching and neuropathy on the left side of my neck.

We have a vacation at Sandals in the Bahamas starting on February 3, just under two weeks away. Normally, I would be very excited. We planned this trip in August thinking that it would be a great time to get away from the cold. This certainly made sense at the time. However, the prospect of trying to travel when my body is not working this kind of discouraging. We've called Sandals to see if there's a chance that we can postpone our vacation. We talked to several people from the resort to see what they could do for us. Each person asked us if we had purchased travel insurance. Unfortunately we did not. We requested an exemption due to medical circumstances. The first person we spoke with told us that change our reservation it would cost $200 per person to change our sandals booking and $150 per person to change our airfare reservation. This did not seem like a good option so we asked to speak to their supervisor. The person that we were directed to give us the same information. Again, we tried to climb the ladder ever given the same spiel. We even asked if a letter from my doctor would help. No such luck. I realize that we should have purchased the travel insurance. But you think that in the interest of customer service Sandals try to see what they could do for us. I thought that at this point we were SOL. I was wrong (maybe). I was talking to my parents last night, telling them about our experience. My mom offered to called Sandals and see what she could do to help. She contacted them today and was given the same statement. Long story short, she managed to get a supervisor to agree to help. My mom was told that if we could get a letter from my doctor explaining my condition and the current circumstances, the supervisor would bring it up with her manager to see if we could get the change fees waived. We're not there yet, but at least it's a step in the right direction. Think positive thoughts for us, please.

Hopefully, the IVIG treatments will start to work. The plan is for me to call my doctors in a week to update them on my condition. They decided to keep the PICC line in for the week in case I need another treatment given the difficulty of the initial placement.

I guess at this point the waiting game. I'll keep you posted...