Sunday, January 23, 2011

Liar, Liar, Pants on Fire

After a kind of rough 2010, I have turned over a new leaf in 2011. From here on out, I am going to tell you all the truth. I have chosen to move my family in with my parents, cause my family significant emotional and financial stress, put my work in a tough spot by taking a leave of absence, take multiple pills everyday including high dose antibiotics that make me sick to my stomach, go through minor surgery that will leave me with physical scars, and undergo weekly IV treatments and multiple other needle sticks even though I have a phobia of needles, all for my personal enjoyment. I am not sick and I don't have Lyme Disease or anything else significantly wrong with me. At least that is the truth according my disability company that just denied my appeal. If they are telling the truth than that makes me a liar. Not only must I be lying, but the three doctors and one other holistic health practitioner I saw are all liars too.
So if you can't tell by now, I am angry, frustrated, hurt and dumbfounded beyond belief. Just a few hours ago I received the denial letter regarding my appeal for short term disability. Just like I said, the rep didn't call, she just dropped the letter in the mail. She could have told me last week she was preparing the denial letter. But in their typical fashion, they pretend they are still working on it and will let you know very soon. It only took them 88 days to tell me once again that me and my doctors are full of...for lack of a better term...full of chocolate pudding.
I only have two questions for my rep on Monday. Can I please have the name and phone number of the best person for my lawyer to call? When can I set up an appointment with one of your doctors? Since my three doctors are all wrong and they have all seen me, I would love for your doctor to do an exam and run some tests and tell me what the heck is wrong with me then. I will love to hear her answer. I was certainly holding out a little bit of hope that the answer would be different but I kind of knew if the back of my mind it was going to be a no. I am glad that in their letter they reference a job description for a Fire Inspector from some official manual or book that was updated in 1991. Glad they are using current information.
It will be pointless to rehash everything I have said more than once already about what a crime this whole thing is. I could devote the rest of my life to fighting for Lyme patients. In some form or another I will. I am far from the first person to go through this and I certainly won't be the last. I guess part of you just wants to believe that it is only really bad for a few people. I am afraid that in the case of Lymies it is this bad and worse for the vast majority.
I know I need to give you an update on my IV treatments and symptoms and all but right now I am just fried. Part of that has to do with the fact the I have a severe headache tonight. I will say the first week of at home treatments is done with. Ryan is an awesome nurse and I am so thankful for him. This is going to be a long 6 motnhs to say the least. Time for some warm milk, Advil, melatonin, and my Saturday night COPS to put me to sleep. I am home alone while Ryan and the girls are on a date to the Monster Trucks with some friends. I did not want to ruin Ryan's night by calling and telling him, so even though I am writing this post tonight, it will have to wait until the morning when I can tell him.
I know in my heart that this turn of events allows another opportunity for God to act in big ways. I need to get back on track with my time with God and really just learn to rest in His promises. I am in the middle of a journey where I am learning how to "lose control, without losing my mind". Basically like I was reminded a couple of weeks ago, God is going to rip the control freak out of me one way or another. Needless to say the next few days maybe filled with all sorts of venting and rambling as I try to process what has happened and where we go from here or they may be empty as I am just worn out from all of this. Sooner or later you will be back up to speed. Thank you again for checking in and all of your support! It is appreciated much more than you know.

Friday, January 14, 2011

Meet Donald

I can't explain to you how my children came up with this name, but after much debate they have named my port Donald. So from here on out when ever I refer to Donald I am talking about my port. Let me start by saying disability does not have an answer. I wish I hadn't even called today. Telling myself I wouldn't know until the 24th was actually keeping me somewhat calm about the issue but calling today got me all upset again. My rep did get the final physicians report but hasn't finished up her part. She said they do work on Monday and don't worry she will have an answer before the 24th which is the initial 45 day period. I had to remind her that the 24th would be the end of 90 days and I had to have an answer. Oh yes that's right. Anyways, I am going to try and not call until the 24th. I am hoping the rep will do as she has indicated and call me but I won't hold my breath. Moving on...
Donald certainly isn't as sore as he was Tuesday but he still hurts when you push on him. Here is a little recap of what has gone on the last two days. Not very exciting and I don't have a video for you but that should come next week. Yesterday (Thursday) we went in to the doctors to have my first IV treatment. The office was crazy and things took a little longer than expected but that was okay. Ryan and I were called back and put in a room right next to the IV lounge as I call it. There are 6 or 8 recliners with pillows on them and cables hanging from the ceiling to hang the IV bags from. If I remember next week maybe I can get a picture. There is an IV nurse there 3 days a week and believe me she is busy. My doctor has a very integrative practice and does all sorts of things there. IV ozone and vitamin C plus a practitioner who does colon hydrotherapy are only some of the things that go on there. We waited for the doctor to come in and get us started. We decided that yesterday and today we were going to do all my medicine in 1 infusion (if I am using that word correctly). So we did 4 grams of Rocephin yesterday morning and this morning instead of 2 in morning and 2 at night each day. That allowed Ryan to practice doing everything he needs to do at home including taking the needle out. From here on out I will go in every Tuesday and have the nurse or doctor "access" Donald and give me my first does. We will then take all of the supplies home for the week and Ryan will give me my 7 other treatments and "deaccess" Donald on Friday night after my last treatment. Unfortunately when my port is accessed it is not as low profile as we thought but that is just something I will have to deal with. My biggest fear by far was the actual needle stick. It wasn't to bad. I would still probably prefer to use the numbing cream but the doctor doesn't think I will need it. So the doctor had Ryan jump right in and start mixing my meds with the saline and putting it all in the bag. It only took about 15 to 20 minutes to infuse. I tolerated the full dose fine yesterday. I was just tired. Same thing today really. Only when we done Ryan had to deaccess Donald which just means pull the needle out. Not fun but bearable. I think Ryan has it down and will do just fine with everything. I could probably even do it myself but I don't want to take any chances I will have brain fog and forget something. I have tolerated today's dose okay. We will see how things go over the next week. I am due in about a week to start my bug killing cycle so the timing couldn't be better. Next week may be very interesting. I was joking about Ryan's debut on youtube. Maybe we should call it Dr. Ryan's in the House. I am actually not sure if I will put the video of what this process is like on youtube. I guess what ever is the easiest way to share it.
All of sudden I am kind of running out of things to say. I guess I just wanted to let you know a little bit about how these two days went. I am starting on Actigall as a preventative measure for gallstones. Right now nothing else is changing. When I am done with this bottle of Mepron I can stop that but I believe everything else will continue. Not really getting a break but whatever needs to be done. My husbands honeydo for the weekend is to install two hooks for my IV bad. One above our bed and one by the couch. I joked about him installing a whole wire track so I can just walk around with my IV. He just says maybe I need to learn to sit still for 15 minutes. Other than the hooks and getting a container for all my supplies that should be it. I guess that is it for now. Talk at you soon.

Tuesday, January 11, 2011

My Port Is In

Well after all of the drama, stress and anxiety of the past week, I am happy to say my port is in. I started yesterday expecting to have reschedule my port "install" while I waited for some insurance issues to be worked out. In the end things worked in my favor. What a surprise. To recap the last few days...last Friday I got a call from the nurse at my doctors saying everything had been taken care of and the hospital had my orders. They should call me but if I waited an hour or so I could call them and schedule everything. I waited about 2 hours or so and called the hospital a little after 12. They had everything but when we went to schedule it, the nurse wasn't sure that they would do a port and said they usually do the PICC lines for patients like me. That got me a little nervous, but she confirmed we could do the port and set it up for 1:00 p.m. on the following Monday (yesterday). I was all happy we were moving forward. Not 10 minutes go by and the hospital calls back and wants to cancel my procedure because they don't have a pre-authorization from my insurance. First they had my old insurance and then they didn't have approval and my doctors office closes at noon on Fridays so they couldn't reach anyone to try and clear it up. We kept it scheduled for Monday and hoped we could work everything out before 1:00. I won't go into detail of what happened after that but it was pretty much a repeat of Thursday. My husband and I had a great talk about everything and he did such a good job calming me down and helping me get another perspective. So as I approached yesterday morning, I told myself to not expect to have the procedure done and then I got surprised when things worked out.

I was really glad that my time to worry was very limited. I only had about 3 hours from the time I heard it was a go until I had to be at the hospital. So we get down to the hospital and check in. Of course I left the house without my list of medications so it was hard to remember everything. I keep telling myself I need to give my husband a little card with all my meds and supplements with their doses on it just in case something happens. It all worked out and check in was easy. It was a few tense minutes until they called my back. I gave my husband a kiss and off I went. Luckily I was worried about how cold I was going to get but I only had to lose the clothes on the top half. A nice "nurse" took me back to a room that looked about like an x-ray room. (This is done in interventional radiology) I was thinking I was getting an x-ray first but this where it was all going down. The doctor or two doctors were men but everyone was a woman. I can not say enough about how sweet and funny they were. They showed my a little demo about the port and talked to me about everything. They could tell I was nervous. I laid down on the table and they loaded me up with warm blankets. That is the one great thing about the hospital...warm blankets. I just love them. It was great because I even got to keep my Uggs on so I for once I wasn't cold. The nurse goes to put the IV in. She was great. I almost didn't feel a thing. She asked me if there was certain music I liked because they had satellite radio and probably had anything I wanted. I said Christian. She found a Christian rock station and I wanted to cry. Not only was I put at ease but I figured there was a slight chance it was a witness to whatever staff was in that room. AWESOME! I was getting IV sedation so I was awake but out of it. She didn't even tell me she gave me the medicine. I was just laying there, all warm, listening to great music and I got so sleepy. I said did you give something yet. She said yes and I will give you some more. I was out after that. I remember feeling some pain as they were pushing or snapping something in. I could her the two doctors talking to each other but I don't remember their conversation. Then it was time to get up. I was very sleepy and out of it. No nausea though, which is a surprise for me. I asked the doctor if I said anything embarrassing and he said no. I was glad for that. They wheeled me out in a wheel chair and away we went. I was out of it most of the afternoon and night. I helped get the kids and we did eat dinner but in between it was very hard to keep my eyes open.
I was extremely sore yesterday and still am today. Part of it is the bandages. They seem to pull my skin depending on how I move. This is definitely a reminder that I need to really work on my core strength. You don't realize how much you use your neck and chest muscles until you have surgery or something that really affects them. This same happened when I had my thyroid surgery back in 1995. It was so hard to sit up from a laying down position because I would strain and pull all of those muscles in my neck. As a side note, it was kind of funny yesterday when the nurse was explaining they had to make a small incision in my neck so they could access the jugular vein to put the tube or catheter part in. She tried to reassure me the scare would be small. I said I'm not worried, you haven't seen my thyroid scare. It goes across most of my neck. Doesn't bother me. I like to joke sometimes if people ask me what happen and tell them it was from an ex-boyfriend. A good family friend actually gave me the nickname Pez, you know the candy dispenser, because I open at the neck. Anyways, I wasn't going to worry about this little scar. I have a handful of scars in visible places. I have learned to not let them bother me. They tell part of my life story. Battle wounds are cool! :)
Well, nothing yet on disability of course. I start the IV meds on Thursday. I will definitely video that. Partly so we can see how the nurse does everything, partly so I can share it with anyone who is interested. I feel like that is part of why I am going through this. I have appreciated watching other peoples journey. I think it is helpful. I guess the last thing I'll say, is I am searching for a name for my port. You may think it is weird but I have met a couple of people who have named their PICC line or their port since you have to refer to it so much and it is a part of you for quite a while. So don't hesitate to give some ideas. Thanks for checking in and for all of the prayers and support. I will certainly keep you posted.

Thursday, January 6, 2011

Throwing in the Towel

I don't think I have ever been as close to throwing in the towel, quiting, giving up, as I have today.  I knew yesterday when I was praying for continued help in the patience department I probably wasn't going to like God's way of helping me. Deep down though I have a feeling He would not have changed a thing about today regardless of my prayer yesterday. I don't want to be a quitter and for the sake of my family I can't quit. That doesn't mean I wasn't brought to the brink. The one almost humorous part about today was when I was on the floor sobbing and crying out to God I was saying "I can't do this. I can't do this without You." All of sudden it was like "DUH! You can't do it, but I can!" Once again I was realizing that I needed to have total dependence on God. It is in these moments that I lose sight of myself and my abilities and rely on the only one who can get me through this. I guess that is part of the journey, part of the reason for this trial in my life. In some way, I feel like I should be honored that God chose me to endure this and other times I feel nothing but anger and frustration.
After all of that, I guess I should tell you what pushed me to this point. I was trying to pass the time and not think about the hospital calling and decided I guess I will give disability a call and see what the update is. My hope of course was that the claim rep would have an answer for me. Occasionally I don't care what the answer is, I just want to know. I know though that I will be devastated if the answer is DENIED! It is worth it to wait a little longer if the answer ends up being APPROVED! Anyways, I left a message and a short time later I got a call back. I took a deep breath as I answered the phone and this is the summary of what I heard. "I was supposed to get the final doctors report by the end of last week. I haven't received it yet. I was told I should have it today. Then I just need to finish up my part. I really don't see there being any other delays."  It took every ounce of strength I had and some help from the Holy Spirit to not unload on her. I kept my composure. Although she could tell I was disappointed, I made sure I didn't give her any snotty attitude. I know it is hard to believe that I could be snotty but I have known to unload on unsuspecting people. Part of the Lyme rage thing I have learned. Not pretty. So at least I kept it together. That is until I hung up the phone. Then I was like a puddle of mush on the floor, crying so hard I was trying to not throw up. I do realize how bad it is for me to get this upset. I can not control my feelings though. Bottom line, there is a flood of emotions that need to come out.
I yelled, prayed, and read my Bible until I was calm again. Although it still doesn't take much to put me into tears. I waited a while and finally decided, against my husbands better judgement, that I was going to call the hospital to see if anyone could tell me about scheduling this procedure. The first person I talk to says the hospital never calls patients to schedule surgeries. Then she says oh this is done in radiology, let me transfer you. I get in touch with the scheduler for radiology and she says she doesn't know anything about me or my procedure and that my doctor has send over all of this stuff. Now I have to call my doctor. I had to call them anyways to cancel my appointment with the infusion nurse for Tuesday since I wasn't having the port put in this week. I have to wait 2 or 3 days after the port to start the infusion. I cancelled the appointment and then had to leave a message for the nurse. Now I really my doctor and the staff at the office but I will admit I haven't had great luck with his nurse. I know she is busy but sometimes I haven't even heard back from her. I was told hopefully she could pull my file and if I didn't hear from her today, I would her tomorrow. My luck, everything is going as planned and the doctor just thought the lab results would be back sooner. I just know he told me a while ago we only had to do everything about a week ahead of time and that is not how things are working out. I am just so over it all at this point. Of course I am worried that this is pushing everything back. The later I start the infusion, then that may mean the later I can go back to work. I don't want to push my luck with the City. I am just freaking out at this point.
So be honest with me. Is me calling the hospital and all, is that me not being patient? Does that mean I am not trusting God and I am trying to control the situation? or Does it just mean that I am taking charge and following up? Here I go again analyzing things. I just always question what I am doing and is it right, wrong, neither...How does God view this? The questions are endless. Do you see why my brain never shuts off. Believe me, my brain is still going way faster then I can type. It's like a thought pops into my head, it's kind of at the forefront of my brain, but there is all of this background noise in the form of other thoughts cluttering things up.
Well now that I got that out, I am going to try and just forget about it all until Monday. If I am lucky, I will get the port "install" scheduled for Monday and we can move on with things. Depending on how things go, maybe I can still have the date I planned with my husband as part of his Christmas present. The plan was to go see The Ultimate Wave (I think that is what it is called) at the IMAX theatre and the Reuben H Fleet Science Center. It is all about Tahiti and surfing and sounds incredible. I  guess that would be the good thing that comes out of this. Good night for now. Again, please, if you are a praying person, continue to do so. It is hard for me to ask for help or anything else. I may where everything on my sleeve and be a very open person but to ask you to do something for me is hard. But I do need the prayers. I don't want to continue on this way...full of anxiety, fear, and stress. I want to take it all in stride. I read in my Bible today that just because you "count it all joy" when facing struggles, doesn't mean there isn't pain and hurt and that you just pretend your struggle is not a struggle. It means though that you can see the greater good and know that this trial or struggle is going to bring about better things. I am really trying to count it all joy right now. If I don't try that and believe and have hope of what is to come then I might as well throw in the towel. I would have nothing left. As much as I want to at times, and as much as I wanted to today, I won't quit! I can't!

Wednesday, January 5, 2011

The Anxiety is Killing Me

It is no secrete at this point that I don't really handle stress well and I am not very patient. Those are things over the past year I have wanted to and had to work on. Both of those things are a work in progress. Right now I would say I have taken one step back. Today was the anticipated day the hospital was going to call and tell me when to come in for my port. As of 4:00 I have not heard and I think it is safe to say I won't hear anything today. That means I won't be having the procedure tomorrow. I guess that still leaves a chance for Friday. I so wish they would have called just so I would know when. But knowing me, that wouldn't help my anxiety level. I have been getting increasinly anxious about this the past few days and it is very hard for me to sleep at night. I realize it is not good for me but there is not a whole lot I can do about it. I also don't know how long to wait until I call the doctor or the hospital. How bad is it that all of these negative things go through my mind...what if they didn't get the order, what if my blood work isn't good enough, what if they have the wrong phone number, what if....On and on the list goes. Here I am supposed to be working on thinking positive and my nature and habit have been doing just the opposite. Lord please help me to not be so negative but to learn to see the positive in every situation. Also please help me be anxious for nothing and continue to help me with my patience. (I cringe when I pray that last part, asking God for help with patience is almost certainly asking for everything important in your life to be delayed for a very long time.) So anyways, at first I told myself that I would wait until today to call disability. Then I decided to wait until after I heard from the hospital. Here I sit, a ball of stress, wondering how I will get through tonight until tomorrow where I can wait all over again. I think I need a stiff drink, or a good cry, or I don't know what!
I just need to remember God's timing is perfect. So in His time will these things happen....tick, tock, tick, tock!
On a little bit of another note, I had a bad (in a good way) herx day the other day. I had a pretty freaky twitching episode on Sunday that made me unable to speak for a little while. I am sure the silence was welcomed by family however, it is very frustrating when you can almost feel a physical disconnect between your brain and your mouth. I know what I am trying to say but the words won't come out. I managed to get through that and have been really tired the last few days. I did go and use a coupon I had for an hour long reflexology and 30 minute detox ionic foot bath. The reflexoglogy hurt but was good. She said based on what she felt, my mid back and right shoulder were messed up. Right on the button with those things. The ionic foot bath is cool because you sit there and the water changes color to indicate where you are having problems and what toxins you are eliminating. The lady doing that part came over and said that my water was really dark which means joint problems. So kind of cool. It did wear me out and my joints hurt a little the rest of the day. Just trying to relax and detox before the port. I am glad I am herxing only because it means I am still killing bugs.
I have been researching a lot about the port, and infusions and all that. I am glad I have an idea of what to expect yet at the same time it is scaring me. None of this looks fun. I mean, I knew it wouldn't be fun but it looks maybe tougher to handle than I thought. I have seen some young kids go through it though, so I don't have anything to complain about. If a six year old can deal with this than I most certainly can.
I just got done reading "Choosing to SEE" by Mary Beth Chapman. I highly recommend it but it will make you cry. Anyways, in the book Mary is talking about her plan for her life and all of things that were not in it and how God's plan for her life had everything almost opposite. It made me look back and laugh a little about my own situation. I remember meeting a girl right after I graduated high school, who was going on a trip to Australia and New Zealand  with me and a bunch of other students. She had an insulin pump in her stomach for her diabetes. I remember praying, God please don't ever let me get something that requires regular shots or blood draws. I won't be able to handle it! Well I guess God had a different plan. I will handle it, with His help. I don't have a choice.
With that I will say good bye for now. Tomorrow is a new day. Hopefully it is one that is full of answers for me.

Saturday, January 1, 2011

Bring on 2011

Happy New Year! It is hard to believe that another year has gone by. Why is it that the older we get the faster time goes by? Well this past year has been a whirlwind for me and my family. It has been filled with ups and downs and a few surprises. I am happy to say that at least I have a reason for why I haven't been feeling well. I finally can say I am not crazy and I was right to think I wasn't feeling like a 32/33 year old should feel. I am definitely looking forward to finding out what it feels like to feel good. I haven't felt good for at least 15 years so it is hard to remember what it feels like to have a normal amount of energy and just feel normal.

I have so much I would love to accomplish this year. I guess I just need to remember not to be too hard on my self when I can't do everything I want. I would love to start this year all organized, with a perfectly clean house, and all caught up on laundry. The reality is that won't happen. I need to realize my limitations and stop pushing myself beyond my limits. That is certainly not going to help my get any better. It looks like I will be starting this year off with a minor surgery and some challenges that are definitely going to test me. I am looking forward to these challenges drawing me closer to God and making me a stronger person.

I am fearful and excited at the same time about what my future might hold. I do believe with all of my heart that I am going through this trial for a reason. Something good is supposed to come out it. I definitely need to spend some time in pray on the matter.

As far as New Years resolutions go... Well I have always enjoyed making them but I have never keep them for long. I certainly have the usual ones that pop into my head like eat better and exercise more. This year I need to focus on my diet for sure. I need to get extra rest. I need to spend more time or I guess just time reading my Bible. That is one thing I have never been good at. I don't know where I should start. I allow my self to get distracted and I don't make it part of my regular routine. I am hoping to change that this year. I also need to become better organized. That may come with healing of the Lyme disease. It has definitely affected me neurologically. I admit some of my problem with staying neat and organized is habit but a good part of it is neurological as well. My boss would love it if I came back to work a much neater and organized person. Let's hope. I or should I say we (Ryan and I) need to take better control of the finances. I haven't been able to even focus on that the past 5 months due to the disability issue. Of course my prayer is disability gets approved so we can get back on track financially. To be honest we still owe some taxes from 2010 and the government would like their money. I had no ides we were going to be in this position so that is one of the things that has suffered. I have one other bill I am behind on that I need to get caught up on. If the disability is approved all of that will be taken care and we will have some money left to start us off right knowing my medical expenses are coming. I am hoping this week I will get the answer i have been praying for. If you thin about it, please say a prayer about that for us.

Well I am not sure what else to say. I got a little off course but I mainly just wanted to look back on 2010 and look towards 2011. I look forward to continuing to share my journey with you and as always I enjoy reading your comments and answering your questions. May you have a healthy and happy 2011!