On Tuesday, we went back to Dr. Patel's. Even though I was still in pain, he said it was time to begin decreasing the morphine before I became addicted. Dr. Patel said that my site looked great and the scars were healing well, the recovery is most likely taking so darn long because of my fibromyalgia. Downside was he had to move my port (yes, you read that right-move my port) to make sure the pain was under the skin and not above it. Holy ow. He urged me to walk as upright as possible as soon as possible for the fear of not only back problems, but pneumonia (he said if I walk hunched over long enough my lungs will begin collapsing and I'll get pneumonia-yeah we don't want that). My port was also accessed for the first time as he started me on IV medication for three days. One bright spot in this horrible port recovery is how easy accessing my port was! It hurt a good amount when they put the needle in but everyone who I've spoken to who has a port said it hurts the most the first time. There was no searching for veins, wiggling of needles or excess poking-one needle poke and it was in! I had the IV for three days and my oh my how much more convenient it is having it in your port than your arm! I was able to use both of my arms, able to change my t shirt with minimal help and didn't have to consistently worry about the catheter falling out. What a blessing.
On Tuesday night, a lovely 40 degree weather change-with rain-came in. Between the weather change (which means I don't sleep well and my body's conditions worsens), the doctor's appointment the day before, the IV and the continued pain Wednesday was already off to a rough start. On Wednesday I also began my ACT with the writing section, which was 45 minutes long. Writing and reading are my strongest subjects so I felt as if I did okay, although I knew I could do much better if I was feeling up to it and was healthy, which is always a demoralizing and self esteem lowering experience-you want to know you did the best you could. Once I finished the section and my test supervisor had left, I began a five hour episode. Yes, five hour episode. (That set a new record for my longest episode, previous record was two hours.) It was if my body was saying that it had simply had enough. Not only are these episodes exhausting for me, they're hard on my parents as well as they're constantly having to make decisions about what to do, who to call/if to call, etc while watching their child suffer. Once it finally ended, we were all exhausted and I felt miserable. I tried to sleep but once again didn't sleep well as the weather went back up 40 degrees that night and my salt level continued to drop.
I have continued to take a section of the ACT every day from Wednesday until today, when I finally finished, alleluia. Taking that darn test has exhausted me and beaten me up. When I get over tired I also get over emotional which means my family has listened to me cry for a large part of the week. The problem with test taking weeks and time periods is that it limits my ability to work on other school work so I have now fallen behind. I'm going to have to work ridiculously hard these next few days in order to catch up and meet my goal of finishing the nine weeks on time. By Friday I finished my morphine (may or may not have shed a tear when I took my last dose...) and we returned to Patel. He took the IV out, stopped the IV pain meds and started me on Lyrica.
On Saturday, for the first time since my surgery four and a half weeks ago I tried to go "out" to a social event-to a surprise birthday party for my best friend Devon. I didn't feel up to it and the Lyrica wasn't helping my pain level at all, but I thought maybe going out and seeing friends would be the emotional break through I needed and being out would boost my spirits and encourage me to leave the house more. Instead, it did the opposite. Getting there was so much work in itself-my mom bathing me, leaving my hair down, putting on simple make up for the first time in forever (I legitimately forgot how to apply eye liner, I need help learning how to again), putting on clothes other than pajama pants and a t shirt, putting on jewelry, etc. Even with my mom helping me significantly with every single one of these tasks and while laying down while preforming them, by the time I was just done getting ready I was exhausted and in a large amount of pain. Next was getting down the stairs, getting into the car, driving there, getting out of the car and then getting into her house-all tiring and painful tasks. I arrived a few minutes before the other guests so I could settle in and only stayed for about 45 minutes but it was awful, the whole entire time I was fighting back tears and trying not to cry because of the large amount of pain I was in. I couldn't focus on the conversations I was having or the fun I was supposed to be having because I was just trying not to cry. Friends would ask how I was doing and I would say "okay" when in reality I just wanted to cry. Once I said my goodbyes and left, I bawled outside for ten minutes out of sheer pain before my mom could even transport me into the car. I cried the whole car ride home and for a while once I was home. I was so hopeful that this would be my emotional break through, that my depression would ease, and that I would have so much fun I would be encouraged to get out more. Instead, I left in so much pain I never wanted to leave the house again.
That night around 2am I began having trouble breathing. After I took two puffs of my rescue inhaler, my parents contemplated calling Dr. Patel, taking me to the hospital or calling an ambulance. What they ultimately decided to do was to call our neighbor, Mr. Jackson, who is a paramedic. He helped slow down my breathing, but not before it turned into a two hour episode. It was an exhausting night for my parents and I. We are thankful to have Mr. Jackson down the street and are grateful for his help. Upon calling my doctor this morning, he believes it could've been anxiety, exhaustion, an allergic reaction to the new med or a withdrawal from the narcotic, or a combination of any of those things. Because of that, I haven't taken Lyrica or any form of pain meds and am having a tough time managing the pain, to say the least. Consistently fighting back screaming and crying all day isn't very fun. We're calling Dr. Patel again tomorrow to see what his next idea is.
Now for the exciting news! On Wednesday my mom and I will be leaving for a little over two weeks for the POTS Treatment Center in Dallas. The treatment center focuses on biofeedback, which is simply put, retraining your brain. It is noninvasive, Dr. Patel was supportive of our decision to go and we have heard many great testimonies of people feeling better after going there, so we are hopeful that they will be able to help me as well. We know it is not a cure all, but rather perhaps another component-like eating extra salt or drinking lots of water-in my life long battle with managing POTS. I will be in treatment for 3-4 hours a day for two weeks and then there is a machine that I will take home so I can continue to do the biofeedback treatment every day once I get home.
I am hopeful for the possibility of getting better, (my parents and I figure it's worth to go simply because any improvement is improvement from where my health is now) but I'm sad to leave my house, family, friends and puppies for two weeks. Part of the reason we chose this time to go is because it's over my Spring Break, so therefore I would only have one week of tutoring to make up once I get back and it's at the beginning of the quarter which is when typically my work is just getting into me. However, I'm bummed with being gone over Spring Break because it means I won't be able to go to typical fun Spring Break places such as the beach or the lake. Also, a large majority of my closest friends are in college and I was looking forward to seeing them as I haven't seen most of them since Christmas. However, I'm trying to look at the situation as maybe if I get better because of me missing this Spring Break I'll be able to fully enjoy the Spring Break's to come. It's hard being a high schooler though and knowing this is how I'm going to be spending my Spring Break while all my peers are off doing fun things and my sweet college friends are home. We have hotel reservations, but will call the Ronald McDonald House upon our arrival (that's how the system works) to see if any rooms are avaliable. Hopefully we're able to get in soon as it would ease with the cost (the huge treatment center bill is enough in itself!) as well as provide a more "home-y" atmosphere. Ronald McDonald House is a great organization, we stayed in one in Rochester, Minnestoa when we were there for the Mayo Clinic and liked it very much. We are looking for fun things to do in Dallas since I'll be in treatment 3-4 hours a day and then working on homework as well, but I'll still have time to do other things. We plan on seeing family and touring TCU, but other suggestions would be welcome. We are going to be there a while!
I am a total Daddy's girl and am sad to have to be away from my dad for two weeks as well as my brothers, since they add so much joy and humor to our life. We will stay in contact with them through texting and FaceTime (isn't technology neat?) but it won't be the same. Truthfully, the hardest person for me to leave isn't a person, it's my dog Sadie (a 10 month old daschuand mix). Sadie Lou (as we have nicknamed her) is my constant companion who I treat as my child and my best friend. She snuggles with me each night in bed and hangs out in my room during the day with our other dog (a two year old black lab) Grace. She always makes me smile and laugh and she makes my hardest days better. (I know I must sound crazy and weird but trust me when you're home most of your life it's really nice to have a constant companion.) I've been away for her for a night or two but never for a time period this long. I feel like I'll have an especially hard time being away from her since I already know I'll be very lonely while I'm in Dallas. Having my friends visit me won't even be an option since I'll be five hours away and I won't have Sadie Lou to provide me with company.
In conclusion, how can you pray for me? One, for eased pain and a pain med that isn't a narcotic that works for me. Two, for safe travels to Dallas. The drive in itself is enough to wipe me out pretty darn good. We thought about flying since a 45 minute flight is better than a five hour drive for me but we wanted to have our car while we were there and didn't want to pay to rent one. Three, for the treatment to work in some way. Even if it's only a little bit, we are okay with that. Any help is better than none at all. Four, for me to have the energy and ability to finish my school work on time and reach my goal of finishing the quarter on time. Five, for my parents, especially my mom. Being the primary care giver of me while still raising three boys is exhausting on her and it wears her out in every sense. Six, for me to feel comforted, not depressed and lonely, while I'm in Dallas for two weeks. I'm thankful that we at least have an option to try, here's to lots of prayers hoping it works. I'll try to write an update later this week once we're in Dallas.
"But I keep on trusting You, even when I am afraid." -Psalm 56:3
No comments:
Post a Comment