Monday, April 25, 2011

It can't be good can it?

Happy Easter! I hope you had a wonderful Easter weekend celebrating the fact that He has risen. I was able to spend some time with friends which was nice. This past week has been a little busy. It has been hard having the kids off of school. The weather went from great last a week ago to overcast and cool the whole week. It wasn't bad but we ended up in the house a lot more than I was expecting. I was hoping to do something fun with the girls while they were off but things just didn't come together. I think they still had an okay week off though. It will be nice when they go back to school tomorrow.

Nothing much has changed since the end of last week. I still have to get myself together as far as tracking my symptoms  go and just making sure that I have a really good and simple plan in place for getting all of my meds, supplements, and food in everyday. I just can't seem to do that stuff if I am out and about. That obviously won't work when I am back at work. I am still waiting to here back some from work about some of the final details for me coming back. STRESSFUL!

On a different note, I have been waiting for some basic blood work to come back. I figured the doctor would go over the results when I came in for my IV on Tuesday. I haven't seen the doctor in the last few weeks. Usually he pops in when I am getting my IV and just checks in but I think the last two weeks I haven't got to see him. On Saturday, I took the girls to a birthday party and while I am sitting there my phone rings. I look down and see that it's the doctors office. That is funny but it must just be the automated system telling me I have a message. His office uses a message system to give you blood test results and stuff but I still thought it was weird to be calling on a Saturday. I answer the phone and it's the doctor. My heart kind of stops and he says he got my blood tests results in. Now I am silently starting to panic. This can't be good if the doctor is calling me, himself, on a Saturday afternoon. Well basically everything looks fine. Really? I guess I have a pretty amazing doctor to call on a Saturday to tell me that. My CD-57 has gone up a  little more to 61. Over 60 for a Lymie is good but it needs to be back up too 200 or so when we are "all done" with treatment so to speak. At least my immune system should be starting to function on it's own a little bit. My concern with that is, if my immune system starts fighting some of the Lyme or co-infections itself am I going to start to feeling worse again? I guess time will tell. The only test that was low was my Vitamin D. This is somewhat concerning because I had boarder line numbers for Osteoporosis last year and I eat a lot of dairy. I have been taking Vit D supplements for a while and now the doctor wants me to increase them. I will ask more about that on Tuesday. I am guessing there is something I may need to take to help the absorption. The doctor asked how I was doing and if I was still feeling better. I explained that I was feeling better than I did 6 months ago but that I had this increase in my joint and bone pain. I had maybe more days with no pain but more days with intense pain if that makes sense. He told me to remind him and on Tuesday that he is going to add a Vitamin C treatment to my IV after my meds and send me home with some to do at home. I will find out more about that on Tuesday as well. Needless to say the call was good.

Despite the fact that I am supposed to go back to work in a few weeks we are still struggling financially and will be for a while. God has provided every step of the way even if it is not how I pictured things going. I am super excited and blessed that some of photos have sold. I do paid from my work even if it is only a few dollars per order. I am more excited that people are buying my work. I can't wait to get a chance to take some more pictures and add them to albums. People buying my work is probably one of the best feelings I have had (next to getting married and having my daughters). It gets me dreaming again, something I had stopped doing. Dreaming about the future and believing in possibilities. You can check out my work at my link on the top of the page. I love feed back and to know you visited even if you don't buy anything. ( To take a chance and try to help pay for some of my medical bills and treatment I also set up a donation page. You can click on the donate now button at the top of my page or go visit my page at

I will keep you updated on the what the doctor says and work and well just life for us. Thanks for following along on my crazy journey called life. Oh and Happy Birthday to my wonderful husband.

Thursday, April 21, 2011

Can you say NERVOUS?

Nervous doesn't even describe the feeling that is beginning to build up inside of me. The time has come when I must go back to work. First off I don't think I thought that I might be off as long as I have been. At the same time I knew when I left that there was no way to tell if or when I would start feeling better. I am fearful that the requirements of work are going to significantly affect my getting well. I have come to accept the fact that I very well may never get rid of this disease. I will most likely be plagued with some symptoms for the rest of my life. Although I have had some improvements I am not feeling like I thought I would when I went back to work. I have also had a very rough couple of weeks. A lot of my symptoms are less frequent. However, the pain in particular, has been less frequent but way more intense. When I do have bone or joint pain it has been running at 7 or 8 on a scale of 10. So that does present some challenges. I'm also realizing that when I herx or have a flare or just need to lay down which can come on at any moment of any day that I won't be at home to deal with it. If I am out and about now and that happens I can come home. I plan my trips out of the house carefully as far as not usually going far away and not putting myself in a position where I can't leave or if I did need to leave that it would ruin the trip. My husband has had to go and do things with out me because I didn't want to take the chance that I wouldn't feel good. I am working on having a positive attitude and bottom line is I have to give this a shot. I am going to leave this in God's hands. I won't put the financial needs above my health though.
There is a lot for me to do in the next few weeks in preparation for my return. I have really got to get a handle on tracking my symptoms and what I am taking and doing everyday. I really seem to have a handle on when my Lyme cycle is going to hit but there are certain times it lasts more than a week or I herx at times other than just that week or so. Since I have such a hard time getting in all my supplements, antibiotics, eating right and detoxing being gone a majority of the day is only going to make that worse. Plus the added stress. I know I need to reduce my stress as much as possible but I won't try and lie and say there is no stress in my work. The added stress for me usually means an increase in the the double chocolate chip muffins I love from the coffee shop across the street. Since sugar is supposed to be one of the worst things for me and I haven't done the best job of controlling it at home, I am concerned about how I will handle it at work. My will power and self control sucks to be blunt.
Well with that being said, I guess I just ask for extra prayers. My family, including my parents who have so kindly taken us in, have been tested in a lot of ways, especially the last week. Finances and my joint and bone pain are probably the top two concerns I have right now. Thanks again for following my journey. These next few weeks are going to be very interesting to say the least. Stay tuned!

Monday, April 18, 2011

On the Rebound(er) and Other Stuff

I have been repeatedly trying to get my act together when it comes to eating right and doing other things to help this process move along in the right direction. Time and time again I fall off the wagon. I have never had good self control when it comes to sweets or should I say not eating sweets and eating the right stuff instead. I am sorry to say but if some of the healthy stuff actually tasted good it wouldn't be as big of a problem. The other issue is cost of course. I haven't given up though. I am constantly climbing back on the wagon and trying again. I think part of my problem is that I try to make to many changes at once. If I could pick one thing to start with and go from there it would probably work much better. As usual though, I'll agonize over which thing to start with and then not do anything. I guess picking anything is better than nothing. Something for me to try. One of the things I have tried on and off is to make a green smoothie. Making on that tastes good is a little tricky. I may need to pick different super greens for one. Mine are a very strong berry flavor. I tried one the other day that had a whole avocado in it. It did give it a very smooth texture but I kind of had to choke it down. I recently got a link to a website that is supposed to have some good recipes. I'll check it out and keep playing around. When I find a good when I will let you know.
I will say I have been making it to the gym a couple of times a week. I have been walking on the treadmill and doing lower body weights. Doing anything involving my port, even when it's not accessed, makes me nervous. From what I have read weight training is what my focus should be. Cardio or aerobic type training isn't good for us. I do walk on the treadmill for a while but I may reduce that and just keep up with the weights. Some Lymies have to start with physical therapy type exercises because the disease has taken them so far back physically. I am thankful for what I have been able to do.
Now about being on the that is. The rebounder. I bought one about two weeks. It is essentially a mini-trampoline. My mom had one of these back in the 80's. Mine is about as cheap as you can get. I didn't get in depth on the differences but paying $35 versus $350 seemed like the way to go for me. If I become a crazy rebounding pro then I may have to upgrade. Until then mine will work just fine. It sounds like rebounding is supposed to be one of the best exercises around for you. It is supposedly much easier on the joints. When I was researching a little about it, I found a crazy rebounding gym in San Francisco that looked so fun. Well the reason I am rebounding is not so much for exercise but for detox. I will say that after just a few minutes my legs are getting tight so it definitely seems to work on the exercise part. The detox part though has to do with the lymphatic system. Our lymphatic system plays an important role in clearing the junk from our bodies. I'm sure you know what a swollen lymph node feels like. I have learned that the lymphatic system is filled with one-way valves. The bouncing movement helps open the one way valves and dump some of the junk it has been accumulating. My doctor thought it was great when I said I was going to start rebounding. It makes sense to me. Now I hope it works. I can only do it on the days when my port is not accessed. But I am trying to do it a couple of times a day for about 5 minutes. At least once a day after I rebound, I go and dry brush my skin to get remove the top layer of dead skin and get the circulation going and then I take a hot shower and wash with my activated charcoal soap. I am hoping that this routine really will begin to make a difference in getting some of the toxins out. I still do my Epsom salt baths a lot and I really want to start using the FIR Sauna. I have some friends that have one and have told me I can come use it. I don't know why I haven't taken them up on the offer. I just don't like to be a bother. And to drive 15 to 20 minutes one way to be there for only 15 minutes seems like a lot. I am trying to work out the finances to buy a portable one. I know a handful of Lymies who have a portable one and it works great. I can get one for under $200. I know that seems like so little but when you have maxed out the credit cards and have $700 plus of medical bills a month it can get tricky. I'm sure we will make it work sooner or later.
Switching subjects (which I never My husband and I had a good talk yesterday just about where things are going with treatment, work, etc. (I won't share as much as I want to in regards to work and some of what is going on right now just because I am not totally comfortable with it and there are still some unknowns) Basically our conversation had a lot to do with mental attitude. I will say that I do believe that mental attitude plays a role in a lot of things including recovery or healing. My husband is a very big believer in this. We have a slight difference of opinion on my mental attitude and how positive I am or am not being. I know I have probably talked about this a million times so I am sorry if you are tired of hearing it, but I had to explain to him that for as much as I complain or am vocal about how I bad I am feeling that I actually try and keep my mouth shut a lot. He said if I looked at Facebook posts the past year I would see a lot of negative stuff. It's weird because I have been wondering this past week about creating another Facebook account for all my Lyme friends and keeping other friends and family separate. I know a few people who have done this. I decided I wasn't going to do that but that I would try even harder to keep my whining to my Lyme groups that I joined just for that purpose and for support from other Lymies. Then last night I see a challenge by one of my friends for the next week to keep our posts in the one group really positive and leave the negative stuff out. I am seeing a trend here. So I am going to try to do better. My blog may be the one place that I vent like crazy so I am apologizing in advance if there is a lot of whining or not so happy stuff. I guess I struggle with wanting to be positive yet at the same time, get the word out about the reality of Lyme Disease. If you never talk about the bad stuff people may not take this disease seriously and may not understand how debilitating it really is. I guess I just need to work on finding the balance between the two. It will come eventually. So Ryan and I talked more about work and my upcoming return date. The discussion revolved around how I would know when I was ready to go back. He says if I don't ever "want" to go back then I will never be ready. I'm sure that I haven't kept it a secrete that if I could be a stay at home mom I would. That is where my heart is. I told him I would rather be at work and feeling great than be at home feeling like I do. Unless a miracle happens, the feeling great part doesn't seem to be in the near future. In fact my couple days of feeling good quickly gave way to a rough couple of weeks. Do I feel better than I did 6 months ago? Yes. Have I had more days of intense pain in the past 2 to 3 weeks than I did the past almost 11 months? Yes. I may have more days with very little symptoms other than feeling tired and the fatigue may not be as bad. On the flip side though the days that I don't feel good, especially with pain, the pain is intense, almost debilitating. My neurological symptoms continue to decline slowly. My spelling sucks. Our two great secretaries at work will be busy proof reading all my stuff for sure. So basically I will be going back to work (part time to start) in the next 3 to 4 weeks. I have to give it a shot. I am just worried that I will start to regress. I am going to do my best to have a positive attitude. But I know in the end I have to be realistic. I am not superwoman. Hopefully things will turn out just fine. Bottom line, God is in control. If things go according to His plan then they will be perfect.

Wednesday, April 13, 2011

The Pit

As you have probably noticed my posts are starting to get a little sad and pathetic. At this point I realize there is not point in trying to hide it. It's really hard to force a "Happy, Happy, Joy, Joy" attitude when that is not how you feel. The reality is this week I have slipped and fallen into that horrible Lyme pit of depression. I am glad that I don't fall into this pit as often as I used to but it does still happen. It just kind of snuck up on me. I should have known as I have been wanting to post an update for a few days but just couldn't get my thoughts together. I haven't been feeling the greatest physically and now my Lyme cycle is here so things just kind of snowballed and knocked me into the pit. The term depression has taken me a long time to get used to. I still don't like to use it but I would be lying if I called it something else. At least I know it is part of the Lyme and I am hoping that once we get the Lyme under control, this will disappear also. For me it seems that the depression and rage go hand and hand. I am short on patience with everyone and little things annoy me very quickly. I am super emotional at one end but can end up feeling almost nothing on the other. I catch myself just staring off into space with my thoughts bouncing from one thing to another. I think to myself you need to get up and do something but I end up just sitting there being almost unable to move. It would take too much effort to move.
This is when I just want to crawl into bed and hide under the covers until it passes. I am hesitant to open my mouth for fear of what might come out. I try to fight back against the depression. I don't want to let the stress of any other issues compound the depression. It is not easy.
I wonder if there is ever a time with a chronic illness that you become okay with it. Do you ever except that you will most likely be fighting this illness on some level for the rest of your life? I don't know. I would like to say that will be able to say that I am okay with this one day. I guess it's just taking longer than I thought.
My few good days were just enough to make me think that I had turned a corner only to be over run with some days of intense pain, fatigue, anxiety, and insomnia. As I sit here now, the left side of my face is going numb. It feels like my skin is getting super tight on that part of my face. That symptom had disappeared for a while and now it is back. I hate that about this disease. Just because a symptom has gone doesn't mean it has left for good. All of my symptoms have left for a time only to re-emerge weeks or sometimes months later.
I am still holding out hope, that I am making progress, that we are moving in the right direction. After all the blood work seems to indicate that. You just want to your mind and body to agree with the blood work. I know any added stress isn't helping the situation. Finances are tough. The medical bills keep piling up. I do have to pay over $1200 for my port surgery. I just paid $400 for one months worth of supplements. The next 6 weeks are critical as to weather my return to work goes through or not. I am praying hard and trying to give it all to God. I know my my worry won't change the outcome. I am praying for a "Revelation" (song from Third Day) and to realize that "...blessings may come through rain drops" and "...healing may come through tears" (song Blessings by Laura Story). Just keep me in your prayers. Heaven seems that much better when I think about the fact that there is no more Lyme. Thanks as usual for following along. Hoping for happier posts soon.

Tuesday, April 5, 2011

Lyme and Life- You can't have both

Now don't get me wrong, I do realize life goes on when you are sick and a lot of it has to do with your perspective on things. It's just that there are times when it doesn't seem like you can do both, especially with Lyme. I think I have just been a little extra stressed lately and things seem a little overwhelming at the moment. Having Lyme Disease is like having a full time job. Being a mother and wife in and of itself can be a full time job. Still many of us have to work full time as well. The thought of trying to do all of it has me a little worried. Before I was diagnosed, I did it all but not well. Neither work nor my family got my best, I was stressed out and felt bad most of the time. Prior to being diagnosed though, I was really only being a full time working mom and a wife. Once you are diagnosed and treatment begins, things change radically. When you realize what you have to do to get better, treatment can quickly take up most or all of your time.

A set of highly referenced guidelines for Lyme quickly outlines a few things that are a must for successful treatment...sleep is number one. You can't get over tired. (Ya right) Not just sleep at night, but napping at least an hour everyday and before you get tired is essential. For most Lymies, that is difficult as insomnia is one of the symptoms we have probably been dealing with already. So now, in a perfect situation, you would be getting 10 to 12 hours of sleep a day and sometimes more. There are plenty of days when you don't get out of bed or off the couch. Eating right and taking all of your meds is extremely important. If I took all of my meds and supplements at the right time everyday on my IV days I would be taking stuff about 11 different times through out the day. Exercise is important but is very hard to do. It can be almost impossible for some people yet it is needed by almost everyone. Some people need fairly aggressive physical therapy to help with what was lost. Now you have to squeeze in detox. If you are not helping yourself detox all of this crap out of your system then you will feel so bad so much of the time you really won't do anything. FAR Saunas, rebounding, lymphatic drainage massage, colonics, enemas, Epsom salt baths, dry brushing...that is just some of it. Although this may seem like a want instead of a need to a lot of people many of us will tell you different. Taking time to connect (Facebook, on-line, yahoo groups) to other lymies for support is super important. You don't want to constantly complain to friends and family and fellow Lymies know the hell you are going through. You need to keep on the latest research, treatments, tests, and laws. You need to be educated and you need time to escape. There are times when all of this can take up a day. Now add in you roles as a parent and spouse. Something is going to suffer when you do both. When I try to be the mom I want and my kids need my Lyme suffers. I look at the pill box and realize I missed a dose of something. My IV's are spread apart farther than is ideal. I forgot to eat. I didn't get a nap. When I try to be the best Lyme patient possible my kids get to much fast food, I would be missing my daughters games, we miss church, the t.v. becomes the babysitter.

Now with my possible return to work getting close, I would be lying if I said I wasn't worried. June 1st is just around the corner. Even if I continue to have better days, and start feeling consistently better, for at least the next few months, nothing changes in my treatment. I will be still doing my IV's and continuing with all of current meds. In fact, I have just added a few more supplements, that should help me feel better but I will be up to 36 to 42 pills a day (depending on how I feel). Plus at least 5 liquid herbal supplements that I take twice day. The need for sleep, detox, and emotional support wont change during this time. In fact sleep may become more important as I am doing more. The requirements of my family won't change either. There will still be games and practices, vital time with mom and dad, church, family meals...Something will suffer. This disease just doesn't allow you to be sick and have a life. I am scared about the future. There is no way around it. I am praying God really gives my family some direction and we figure out what we need to do.

My story is in no way unique. Any Lymie will tell you their own story that sounds so similar. I don't doubt that there may be other diseases out there that can do the same thing to ones life but I  can only speak about the one I have and the havoc it is caused in my life. It is a vicious cycle of trying to be a compliant, diligent patient so you can get better as soon as possible yet trying to hold your family together and not let life pass you by. I don't wish this disease or this situation on anyone.

I'm not giving up or losing hope. I am just having a little set back as I try to work through this all. Almost a year in and things just seem to be getting crazier. There is no end in sight and for now that is okay. I guess it is like running a don't see the finish line when you start out. It's like my doctor always says to me, "Your treatment is not a race." I guess he's right. To some degree, treatment will become a way of life. I will not be doing as much as I am now for the rest of my life but you don't know if you ever get rid of Lyme. If my kids have it, the cycle will only start over for our family. I look forward to the day when this disease is not the number one thing on my mind. To go a day without it being at the forefront of everything I do and every decision I make will truly be a blessing.

Now to take some pills, detox, take a nap...all in 2 1/2 hours before I have to become a mom again. :)