Alone

It's Saturday night and I am alone. It's my husband's birthday weekend and he is at a Monster Truck Event. I personally cannot believe he went, but he said it was on his bucket list. He asked my dad and uncle to go but they kind of blew it off at the last minute. My dad said it was one of those "seen it done it" kind of things.

I can remember the day when I was glad Andy had something scheduled so I could have some time alone. As an only child not only did I get used to being alone, I began to need it. Now I don't like it. Even when I am down and we are not doing anything, it's nice to know I am not the only one in the house. The problem is that Andy and I were so used to being busy all the time and now that I am down he doesn't know what to do with his time. He gets bored and antsy.

I have never understood "boys night out" or for that matter, "girls night out". I have never been a "girls" girl so I was not invited to many girl outings. When I was, I was completely out of my element and could not wait to get home. Even mixed parties were daunting because as soon as you arrived, you split up to go to your respective corners. I always hung back and marveled at the ability to make small talk. Not me, I'd rather talk politics and religion. My latest attempt at having an intelligent and friendly talk on religion did not go very well. It was the annual "work" party and the seats were assigned. We got lucky and our good friends were at our table who happened to be Mormons. The husband like myself is very passionate and we could go all night debating Christianity and The Church of Mormon. In fact we did and it remained civil and friendly the entire time. Well another couple at our table happened to be evangelicals and at one point as the husband and I were talking about the Mormon Church the guy from the other couple spoke up and said,"Mormon's are a cult". Hhmmn, where does the conversation go from here? It wasn't very pleasant . As the heated conversation ensued, my husband gave me a dirty look saying "I can't believe you started this!" I shrugged my shoulders saying "I had no idea they were going to attack his faith like that?" Needless to say I am banned from bringing up religion at future gatherings (party poopers).

So I guess I will have to go back to my quiet role acting like I am enjoying the shallow small talk about absolutely nothing wishing I was at home playing with my dogs.!

Good Night!
Melissa

I just love test time. All I have been doing is going to the doctors or going to get test. Last week I had a blood test and a follow up with my primary and my rheumatologist. The current information is not too bad considering. My ACE(angiotensin converting enzyme) is extremely elevated but I would have guessed that. My vitamin D is still low and I have an order to get another blood test(oh goody I get stuck again!) to break it down further to know for sure whether or not I need to take it in pill form. She is worried that people with low vitamin D don't fight cancer as well as those with normal vitamin D levels. The rest of my blood was normal which is fantastic.

Next week I have scheduled an MRI for my lumbar spine and a mammogram. Not fun, but at least I will not be getting stuck for these.

I got the CT scan results and got good and bad news. The good news is the lymph nodes in my mediastinum have shrunk. The bad news is I have more permanent lung scarring. It's around where my R middle lobe is collapsed. They (Dr. Carter and Dr. Rehman) feel the reason for the shrinkage in lymph nodes came from the MTX(methotrexate). So I am now back on a stronger dose of it and I get to inject it weekly, Hooray!! NOT! I did the first injection Friday and it was not bad at all. With the 3 meds I am taking to avoid the side effects hopefully it won't make me feel to bad.

And with that honor I also get to go once a month for a blood test to check my liver enzymes. We discussed referring me to an endocrinologist because with both my thyroid and vitamin D levels off maybe he/she could offer some info.

This week I had my pain management appointment and Friday I go to my oncologist. I cannot wait until I have my service dog to take with me to all these appointments so at least I have some company.

melissa

Bad Week!

February has proven to be an interesting month. We have noticed a pattern in my health where I start to decline in November. Usually it's slowly with February being one of my worst months. One of the ways we figured this out was how we never seem to celebrate valentine's day. This really does not upset me as my husband has shows how much he loves me daily and he is always sweet and romantic. We have wondered if it may have something to do with the season or day light savings. We don't know why but there is definitely a pattern. I usually start to come around in March, April.

This year has been no exception and culminated last Friday. All week I had been having a high heart rate(HR) off and on. I have had it in the past it never lasts long and goes away. I also have an irregular HR that does the same. Friday it began and I tried to ignore it as best I could. I was starting to drift off to sleep and awoke with my heart pounding in my chest and when I went to take a breath I couldn't. I immediately sat up, grabbed the phone calling my husband. When he answered I said my heart is racing and I couldn't breath. He said he was on his way and call 911.

Sitting up helped a little and whether right or wrong I paused and said I was feeling better lets wait a second. My other concern was our dogs. Would the paramedics even come in with 3 big dogs barking at them? My husband hung up to call our neighbor to come put the dogs away and stay with me till EMS arrived. He called and said our neighbor was out of town. He really wanted me to call 911 and if my heart would go up that high again I was definitely planning on calling it was just that I was feeling better and I have had this happen before although not that bad. I also knew I had just had an Echo and it was fine. It was Friday night and Tampa was celebrating Gaspirilla and I knew the ER would be crazy. Plus I knew they would admit me which was OK if there was something serious but I didn't want to spend the weekend if I did not need to.

Andy stayed on the phone with me his whole ride home(which unfortunately was an hour. I hate that he has to commute so far but we are so blessed and grateful that he has a job! ) I knew if anything happened he or I would immediately call 911. By this time I have gotten up and walked around and was feeling better. I already had an appointment with my rheumy on Monday and my primary on Tuesday so we decided to wait. The weekend was uneventful and off we went on Monday morning.

When she took my vitals, I was running a temp, my HR was over 100 and my blood pressure was high. I did not feel good at all. In fact I felt about as bad as I have felt. While waiting in the exam room alone, I had another episode and my husband tried to locate someone but couldn't and it was over in 30 seconds. When he did come in it was the first thing we mentioned. I then went over all my other issues that I was having and this is the condensed version of the appointment.

The ct scan they did of my chest looking for swollen lymph nodes causing the swelling in my arm which has now spread to my entire left side including my face(yeah, that looks cute!) showed that the swollen lymph nodes in my chest have gone down, (good news). Permanent scarring is worse(very bad news). My heart looks normal(great news) I have another kidney stone to big to pass on it's own(bad news). My doc believes the methotrexate shrunk the lymph nodes in my chest so I am now on the injectable. I gave my first dose today, no problem. He thinks this left sided swelling is part of the sarc(bad news) but feels the methotrexate may help. He felt my racing HR was from my thyroid being to high and as I was getting those results tomorrow if it was high, adjust my thyroid meds per my primaries prescription. If my thyroid was normal I needed to then make an appointment with a cardiologist.

To sum up my appointment with my primary, first off, my temp was normal as was my HR and BP. My thyroid was barely normal on the low side so my racing HR is not from thyroid. She feels my hip problem which I have had for months may be coming from my spine so she ordered an MRI of the lumbar spine. My MRI of my hip was clean. My ACE was high but not as high as it's been but about the same as last year which I would have guessed from how I feel.

My low vitamin D issue is still up in the air. She is concerned about the fact that vitamin D has been shown to help fight cancer so she wants my levels normal. But I do not want to be thrown into a sarc flare from hell. So I am having blood work done to break it down and see what part is deficient. We will then go from there. We also discussed going to an endocrinologist but will wait until this is all sorted out.

I now have appointments and tests out the wazoo in the next couple of weeks plus I need to have my skin cancers removed. Am not looking forward to that! The rest is just waiting to see what the results show. This last couple of weeks just show exactly how bizarre this disease behaves. One day after coming off of a bad episode and weeks of not feeling good, I am very sick. All my vitals show that and I wouldn't have been surprised to have been admitted to the hospital. I felt that bad. Later that night resting in bed I think I feel better. The next day I am much better. All vitals back to normal and I feel so much better, back to my sarc normal. I have no idea why such a huge difference except a flare. This disease is just crazy.

Andy hadn't been with me to an appointment in a long time. I hate when he has to miss work to take me to the docs. After going over everything Andy asks him if I am going to die! Now we didn't even realize it to we were both home that night talking, but he really didn't give us a reassuring answer. First he kind of made a joke and said we're all going to die, but Andy pressed and asked if this disease was going to kill me? He kind of went into that there's only so much we can do it's still such a misunderstood disease and it effects so much and they have no magic bullet to fight it with and then kind of left it at that. We tried to laugh about it at home and we often make jokes about what he's going to do when I "kick the bucket". But in all seriousness, this disease kills and it kills quickly. People are fine one day and the next they are dead. I can understand that after going through what I did. How can you feel THAT different in 24 hours?

Ah well. All I can do is be grateful I am feeling better and hope the meds I am taking will work to some degree.

Have a great weekend!

Melissa

P.S. Oh! I forgot to add, we have an appointment in two weeks to take Daisha to see if she can be trained as a service dog!! If not, we will get a new puppy and he will be trained to be my service dog. I am SO excited!

Superbow Fiasco

Well,...MMmmmnnn I really wish I could come here and just rave about what a wonderful time we had at the Superbowl. In fact I feel so very bad as both of us but specifically my husband was looking forward to this game. The good news is that there were good parts and over time our brains have the wonderful ability to allow the bad parts to fade and the good memories stick out. This has actually started to happen as we have tried to tell people just the good parts as we feel that is expected, which in and of itself is not necessarily the right thing to do, but we just felt we wanted to choose to look at the positive and I am glad we have. Since no one reads my blog and this is my place to tell it as it is here is the real story.

We have gotten pretty good at previewing the events that we are choosing to go to. As surprises can be detrimental to me, we try and have as much planned out as possible. A week before the game my Andy called about handicap parking. I made the assumption that the stadium would use the typical parking spots, WRONG! So Andy pays for a handicap parking spot and we get sent a map and diagram in the mail and it looks as if the new lot is across the street from the stadium which would have been manageable.

I was still not feeling very good right up until the day of the game but as I did not want to disappointment my Andy, even though he would have understood, I just couldn't do it. I had planned enough ahead of time to have everything ready so all I had to do that morning was put on my make-up and get dressed. Part of my frustration was that I have gained weight. When I can get up and be active I usually lose a few pounds. I hardly eat much but the complete inactivity just kills me. Since I do not go to Steeler games but wanted to support them at the stadium, i bought a new shirt and jacket(as it was cooler). I was very lucky to get what I did but I had to settle with 1 size smaller than I would normally wear. It looked OK, but for me tight. The same with my jeans, I ordered my size, but they were a little snug at my waist which is uncomfortable for me. Andy always says I wear sail pants but I like them loose fitting!

Our lunch was nice but I had a small woozy half way through which thank God passed or we would have had to head home and I had no idea how to tell Andy that. So off we go to the game. We left the house and 12:30 and it was about 2:00pm now. We headed to the stadium and didn't hit too much traffic until our map had us turn down a back road which was to take us to the parking. Traffic slowed here but we were entertained by ladies wearing next to nothing flashing their boobies and thong clad heinies at the limo's with all the guys in them. There were strip clubs and sex stores throughout that area so the guys were happy.

We finally arrive in this parking lot with the stadium across a big field and then from where we were all we had to then do was cross the street and go to the stadium. How wrong we were. At the handicap location(where we were) they were carting people to the stadium(or so we thought). We overheard it was taking hours to get a cart so we made the decision to walk. Once we got across the field and to the street that was across from the stadium, we found that they had blocked it and we could either go right or left all the way around instead of straight across. At this point I could not walk anymore. So my Andy put me against a wall listening to a street preacher and went to find a solution.

The police told us we had to go all the way back to the parking and get a cart. By this time I was already overwhelmed. My pain had skyrocketed from the walking and now we knew how much walking was going to be necessary I felt this was way out of my ability. I allowed Andy to take control and he found one of the cart drivers who agreed to take us on the golf cart. We thought he was going to our gate but he was actually taking the others on the cart to a different parking lot. Well I had to walk back across the road and got on the cart. There was still one more seat and I tell Andy to get on. Wanting to be nice in case another handicap person needed it said no. I told him again he better get on but he said he'd walk along. Since there were people EVERYWHERE and the cart couldn't go fast I thought OK. At some point he picked up this other guy who at first looked handicapped but was actually drunk. Lucky me he sat by me. The cart started taking some turns and with all the commotion Andy lost the cart. I turned around at one point after checking every few minutes to watch him and he was gone! As I thought we were almost at the gate I figured he'd catch up.

For security the NFL had tents and those things they set up for lines to walk through that zig zag(like in the airport) and SO MANY PEOPLE, that I completely got lost. Then to have him cross another street going away from the stadium to take the guys to the parking lot. At this point I asked the cart guy and he said don't worry we'll take you to your gate. So he drops them off, turns around and takes me and the drunk to the end of this long line to get through security. He realizes as we are handicapped we can't stand in that line so then tries to figure out how to get us through.

Andy had told me that they were cutting off cell phone reception near the stadium so I didn't bring my cell phone. I knew I needed to borrow one to try and call Andy but until I was at a point of not moving around so I could tell him exactly where I was I decided to wait. Finally he gets us to a security check point. We do have to walk a bit to get there but at least I was off the cart. So I go through the search, then the metal detector which I set off (where I have never set that thing off in my life) so they pull me aside and he checked me with the wondered off I'm sent through this tent.

I'm now through security and on the other side of this tent but I am STILL far away from the stadium, I couldn't believe it!! So I'm standing there looking lost trying to decided what to do and a worker asks if I need a cart to get to my gate? I gratefully say yes sp she leads me(more walking) to this area where they are picking handicapped people up with more golf carts and taking them to their gates. I overheard a lady saying she had been waiting for 3 hours. I figured I now had time to try and call Andy so I borrowed a cell and tried once and it failed, I tried twice and it failed, I'm thinking I'M GOING HOME THIS IS CRAZY! Then on the third try it went through. He was frantic. I tried to tell him where I was as the signs and maps were way disorganized. According to the signs I was in the brown, green and red section.

We agreed that I would wait where I was for the cart and if we didn't find each other to meet at the seats. But as he had yet to go through security which would take hours, I told him to tell a security person that you lost your disabled wife and to let you through. I was standing between two security entrance points(not labeled) there were no chairs, nothing so I leaned against a chain link fence and kept looking between the two. It was a miracle but I saw him. So he runs over we get in line for the cart and tell each other our dramas.

By now I was really hurting. I had broken out into a cold sweat and was miserable. The sun was going down and it was getting cold. We waited and we waited and we waited. I was in so much pain and wanted to lie down so bad. There was no where but the ground. I leaned on my cane so hard I have a bruise on my hand. As I'm standing there watching all the other "normal" people just walking around having a ball it hit me. I just can't do things like this anymore without a wheelchair. Andy had wanted to get one but I had felt I didn't need it. I just can't do it anymore. A very sad realization. I don't know where I lost the ability to walk.

I was telling Andy that I either needed a cart or an ambulance. I was sort of joking but knew I wasn't going to be able to stay on my feet for much longer. I wanted to leave so bad but again I could not disappoint Andy. Besides we had spent so much money and I decided the only way I was leaving was by ambulance.

A cart finally came and at first they said Andy couldn't get on and I was like OH NO, we did that already and I was not risking that again. Well people were standing around trying to figure out who goes where when Andy told a companion of one of the handicapped ladies who was going to just meet her at the seats to just get in then he stood on the side and told the driver to GO, NOW. We were also told when they dropped us off at the gate all we had to do was go to the elevator and there would be wheel chairs at the top. WRONG AGAIN!

First of all the first guy dropped me off at the wrong gate. I was completely on the wrong side. So once Andy and I hooked up if we had decided to walk instead of wait for a cart where we thought the gate was only a little ways away, we would have had to walk all the way around the stadium! So the cart got us to the gate, we had our tickets scanned and then asked where was the elevator? No elevator, but at least an escalator. So we walk to that, up we go and then NO wheelchair. So more walking to our seat and then AT LAST I could sit down and then THANK GOD the sponsors gave everyone a seat cushion. Andy plops me down, told me to take my pain meds and then goes and gets me some water.

It felt so good to sit down and by now it was 30 minutes before the start of the game. Since we had parked it had been 3 1/2 hours of pure hell. It took both of us awhile to calm down and enjoy where we were. I should have gone home I was in no condition to be there but I am tougher than I give myself credit for. I did have to move around a lot and I fell asleep on Andy's shoulder after halftime but the half hour before the game and the game was really enjoyable.

I knew if we stayed and watched everything we would never get a cart back to our car and besides I knew I was going to be lucky to just get out of the stadium on my own two feet. So we left a little early and got out of the stadium and asked where to get a cart. We were pointed to an area and we walked over to a whole bunch of carts but there was no one there. Andy finally found someone and they said they were VIP carts. So we walked across the street and I stood on the street as Andy walked further back to try and find someone to ask. No one knew even supervisors. Andy got mad at this point and said get a cart! Shortly we got a cart to another area where we were supposed to get different carts to go to the parking lot. So we got dropped off, and then because of things set up we couldn't see anything. There were a bunch of official people standing around and not doing anything. One guy told us to go over there and we would get to the parking lot. I thought he meant that's how we walk to the lot so I said no we need to know where to get a cart. He snapped I already told you over there. I stopped walking and turned to him and was don't you even snap at me after the day I had uh-ha, oh no! They just looked at me.

Soooo we go over and there were carts like they said, but NO DRIVERS. They said just wait someone will show up, ARGH!!!!! I sit down and check to see if the key was there, I'll drive myself, but no key, darn! Finally a handicap cart comes and we get to our car. I was never so relieved to get to our car in my life!!!

I am writing a complaint to the NFL about the disorganization considering the handicapped. Andy was talking to one of the stadium personnel and they said they got tons of complaints about how disorganized they were dealing with the handicapped, so at least it's not just me.

For me the summation of the whole crazy day is that when I went to sleep that night, i slept all the way through till morning and that has only happened 4 times in the last 18 years, so I was tired! But at least my team won!

Melissa