UPDATE: Pic-line is a GO!!

Today has been a rough day..I figured while my pain killers have kicked in and I had a bit of a break to write an update so if I’m not making sense in my typing you’ll know why.

Hmm,  I just realized I haven’t done an update in a while..Its been a bit of two steps forward and two steps back this month (which most of you Lymies will understand that) . I had a scary straight 8 days of severe ‘Herxing’, since my Mom was away my Dad and Husband took care of me. I think it made them more aware of what my Mom has been dealing with during the day with me while their at work. More my Dad then my Husband. I felt bad I think he felt overwhelmed at times taking care of me, but as usual both Men in my life were amazing as my male nurses, lol. 

Because of that rough period I was given a two day holiday without my IV meds, which was so nice. The most important thing with this treatment is that you don’t weaken your immune system or body any more than it can handle. By that Monday after my Weekend of freedom, I knew by Tuesday I’d have to go back on my IV if I wanted to get any better. I was started back on low doses again at 250mg for a week; then every other day 250mg, 500mg for another week. The goal is to get me back on 500mg, yet I have not been able to do  that just yet.

I was not happy with my backtrack, I felt I was getting somewhere since April, but I know this is part of it. Now that I finally got Approved for my Pic-Line (yeah!) I have gotten a bad case of a kidney infection..Which after years of having them, I can definitely say I do not miss having them. I used to get them practically on a Monthly basis. I never knew why untiI I got diagnosed with Lyme and realized that was the culprit, those lovely bugs are in my organs stirring up trouble. So now as of today I’m off my IV and on meds for my kidney infection.

These past two days have felt like hell. It seems when I get these kidney infections everything flares up with my Lyme as well, especially my Babesia. I’ve been dealing with awful fevers, drenched sweating, pain and weakness for the past 48hrs. I had a horrible morning today waking up with tremors that lasted about 20mins..But felt like forever! I felt so bad, I think I really scared my Sister and my Husband unfortunately I woke up the whole family. It was the worst one I’ve had yet since treatment. After I get them I feel so tired that all I want to do is sleep…so I did all day.  Tomorrow or should I say today sine it is 3am, I will still  be getting my pic in. I will only be doing my Hydration bags for the week which is for my low blood pressure. Then wait to start treatment till I’m done my meds to fix this kidney infection.

As I write tonight I’m going over in my head how long it actually took to get this pic-line  to get approved for me. I can’t believe I’ve been on the hep-lock almost 3 months now, most people get it in a month after they first start treatment. With me..just was not the case..CDC and IDSA quote I’m not sick enough, yet I’ve had tests come back positive in the past month with my western blot and my brain-spect. I’m a bit nervous for tomorrow..not sure why, needles and such have never bothered me before. I’ve been through worse in the past, this should be nothing. I think its the idea of knowing a catheter is going to go up my vein the length of my arm. Just kinda creeps me out.. 

I’ve been praying to GOD a lot to give me the strength and my family to get through all of this. I know I don’t have the Lyme as bad as others..which in so many ways I’m thankful for and so sad for others who do have it worse. I think if I brought one family member or friend with me to my doctors office every Tuesday, they’d realized how bad this disease can be, and that I’m actually one of the lucky ones. Even though I know it could be worse for me, it still doesn’t help that I feel my choices in what I want for my life have been stolen away from me for so long. I feel like its passing me by and I’m in a standstill and can do nothing about it, its constant ‘Dejavu’ for me because I’ve done this all before. I have such hope at times that things will get better..other times I’ve accepted that this is my life and I must adjust to it like I have for 15 years before my diagnoses of Chronic Lyme. 

My Husband and I have been married 3 years this September, and we have yet to feel like real husband and wife. We’ve since moved 3 times since then. In a townhouse first for our first year, then both sets of parents. Life has given us a lot of curveballs, but the awesome thing is are Marriage is stronger than ever! The negative is I feel he’s had to suffer in so many ways along with this illness. We had both hoped I’d be pregnant by now and living out our life like we wanted to. I can’t help but feel jealous of others who have that. I know everyone has hard times, I’m not saying they don’t. I just want to know when we’ll get a bit of good luck.

Ya know, Its always amazing to me how with any illness, we all seem for the most part to feel the same way. That longing feeling of GUILT… My family and husband say for me not to feel guilty..how can I not? Its completely changed the way they live. Plus, I can’t give them hope I’ll get better, nor my Doctor as well.  My Husband and I have talked about me getting pregnant the minute I go into remission..yet I worry, will our future child get sick? I’d never forgive myself. Most people I talk to say they’ve had their children and their all healthy. Others not so much. My doctor said it should be no problem but wouldn’t recommend breast feeding. 

Well, I’m going to try to head to bed. We have to be out of here by 10am and I need my sleep or I’ll will be a grouchy gru! NITE:-) 

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