Wednesday, October 24, 2012

I will post soon!

Wednesday, October 3, 2012

Update 10/3/12

(If you don't want to read this huge long post, scroll down to the bottom where I've listed the blessings in my life right now, and what to pray for specifically)

(I hope this all makes sense. I'm a little worn out! So bear with me)

I have so many posts about school and random things almost ready to post, but things keep coming up to where I haven't been able to finish them. I know I've been terrible at updating lately! There's just a lot going on as usual.

School is going well! I'm really enjoying it! I love my three classes, and I love hanging out with my friends. I'm very thankful to have a little bit of normalcy. I have several posts about school to share hopefully soon!!

Right now, I'm dealing with a lot of acute issues. For a little over 3 weeks, I've had lots of painful, swollen lymph nodes in my neck (and the doctor found them in my head) and a couple other places. At first the lymph nodes would swell up on and off. They are just big lumps under the skin. But soon after they started swelling, I began having other symptoms too. With the swollen lymph nodes, I've had fever, severe fatigue, on and off headache and sore throat, more nausea and pain than normal, and I'm not able to sleep well.

I finally went to my primary care doctor yesterday about it because it's gotten worse lately. I thought the swollen lymph nodes and other symptoms would have gone away by now, so I was just planning to wait it out. But these symptoms have been keeping me from being able to do things. I've missed some classes here and there and when I am able to go to class, that really wears me out and I'm not able to be out much besides that. It's not terrible, but it could be a lot better.

I also had a couple other things to discuss with my doctor.

Several weeks ago, or right before I started having lymph node swelling, I noticed that when I woke up in the mornings, my hands were very stiff and I couldn't close them into a fist for a while after I got up. I also started experiencing a lot of pain in my hands. Just in the past couple of weeks, I noticed that my knuckles are swollen. So I have stiffness when I wake up, it's hard to use my hands first thing in the morning, they are swollen all the time now, and they are painful most of the time. My algebra class is in the mornings, and a couple of times I have had to tell the teacher that I can't write anymore because my hands were hurting so much and were still too stiff. 

Yesterday when I saw my doctor, she noticed the swelling in my hands before I even told her that I was having problems, so she wanted to do X-rays on them. She said her first thought after seeing the X-rays, the swelling, and my symptoms, is that it looks like rheumatoid arthritis. This does NOT mean I have rheumatoid arthritis for sure. She cannot diagnose me. But, something is going on with my hands, and rheumatoid arthritis was her first thought, so we will see what the next step needs to be in figuring out the cause of these problems. 

She agrees with my pain doctor that the swollen lymph nodes and other symptoms are from some sort of virus, and her first thought was mono because of my symptoms, and the swollen lymph nodes point directly to that. Mono can be caused by several different viruses. Once again, this does NOT mean I have mono for sure. She is running lots of blood tests to figure out what's going on. My flu and strep test was negative which is great! 

As if having a virus and possibly arthritis issues aren't enough, this past Saturday, I had a fun little trip to the ER because of what feels like another kidney stone. The ER doctor was the one who I saw this past spring when the bone pain I have started. It was the first time we went to a new hospital because our insurance covers more there. In the spring, he decided he didn't like my diagnosis of Lyme, and wouldn't do anything for me. Even the head of the ER and the nurses tried to convince him to help me because they could see how much pain I was in and they thought it was RIDICULOUS that he wouldn't do anything. One of them was tearing up because of how much pain I was in, and how badly I was treated for no reason other than the doctor's personal opinion, not medical reasons.

When I had the first kidney stone a little over a month ago, we went back to this hospital because it was an acute issue and that's where our insurance covers the most. We had a different doctor, and he was wonderful! He even offered to admit me for pain control. But once the pain was under control, I wanted to go home. I was fine for several days, but was woken up with worse pain and went back to that ER and it was the same great doctor. He once again offered to admit me, but I once again decided to go home. But, two hours later, I realized I needed to be admitted, so we went back to the ER and I was admitted. That turned out to be good because the kidney stone on the way out caused damage, and I was very sick. I was bleeding a lot and was in so much pain, couldn't keep things down, and my heart rate was very, very high. The doctor did the right thing by having me admitted. I went through lots of tests and it took several days to get better. So, that hospital was great for an acute issue, just not for the whole "Lyme debate".

This Saturday morning when I woke up at 4:30am with vomiting and abdominal pain that felt like the other kidney stone, we decided to go back to that ER since I had another acute issue, and it's the cheapest hospital (which really doesn't mean that much since it's still really expensive, but hey, it's a little help).

So Saturday morning, I was in the ER for an ACUTE issue, not Lyme related. Unfortunately, it was the doctor we had the first time we went to that hospital for the bone pain. He was not helpful and once again, I was not treated like I should have been. He didn't get the pain under control, and didn't want to really do any tests besides blood and urine tests because "you've had many tests before and nothing has showed up, and it would be cruel to subject you to more radiation". Oh, and judging me from the last time I was here, deciding you think I was making up the bone pain, and now this kidney pain but won't do any more tests because when you find something, you would actually have to treat me is NOT cruel?! I know he remembered me from last time, and he didn't want to deal with me. I have a whole post I'm writing on what happens when doctors decide they don't believe you, so be watching for that. It's a huge part of having Lyme, and it will help people understand the controversy more and what we go through with doctors.

So, we think I have another kidney stone, but don't know where it is, how big it is, or anything at all since the doctor was so very rude and judgmental. He didn't want to help me since he had decided a long time ago that I make things up. Thankfully, we got some supplements and homeopathic medicines to help with kidney/bladder problems and stones and it's helping a lot.

Yesterday my primary care doctor did an abdominal X-ray to see if she could see the stone, but it didn't show up, which isn't surprising. Apparently only a certain kind of stone shows up and there are several different kinds. But the pain is currently better so I'm very thankful. Saturday was a very hard day because honestly, I'm so tired of dealing with how doctors refuse to help me because of assumptions that they make without even knowing the whole story. They won't listen when you try to talk because they have already made up their minds. Again, I'm working on a post about that.

Yesterday I had six X-rays on my hands, two X-rays on my abdomen, and they tried three times to get blood. Well, twice in my arms and hands, and once in a finger stick which was still unsuccessful. They told me to come back tomorrow (which was today) to try again for blood work.

I went into the lab for blood work today, and it was crazy. There were two lab technicians helping because they knew it would be hard to get blood. They needed 9 or 10 vials of blood. I'm so used to needles, IVs, and blood draws that they really don't bother me. Yes they hurt and aren't comfortable, but I'm way past the point of them bothering me. I'm able to laugh and carry on conversations while being stuck with so many needles. Today the technicians acted like THEY were the ones being stuck with needles like crazy. So yesterday they tried for 30 minutes and didn't get anything with two regular sticks and a finger prick. Today, I was there for 50 minutes and 5 sticks later, they had the minimum amount of blood that they needed. Each person is only allowed to stick you three times which is why there had to be two people drawing my blood. They kept saying things like, "I hate doing this, are you sure you want me to continue sticking you, I don't want to do it there because it will hurt a lot". I was like oh my goodness you are being so dramatic. I'm sitting here TELLING you that I don't care where you try, or how many times you try because I need these tests done. Don't keep acting like I'm inconveniencing you when I'm telling you to keep trying, and I'm still laughing and carrying on conversations while you stick me in every vein possible. Most people would be done after stick number one, and I let you try 8 times in two days, 5 times just in the past 50 minutes. One lady acted so annoyed that it was taking so long. Most people would be so mad and not let them continue, so she needs to be thankful that I was so patient and willing to let them keep sticking me. I was enjoying talking to them so I didn't care how long it took or how many sticks it took! I just wanted the tests done so we can find out what's wrong and I can start feeling better soon!

So between all these symptoms and trying to keep up with school, it's been crazy! I'm not behind in my classes, and I'm actually doing really well in them even with everything going on! I feel like I'm able to balance things a little better than last year. I do ask that you pray for peace and rest for me. I'm a little frustrated that so many things keep coming up that I'm having to deal with. It's just one thing after another, and I never seem to get a break. But that isn't stopping me from going to my classes or fighting this battle! Yes, I might miss more classes than most people, but I'm staying caught up. I'm very thankful for being able to take three classes this semester, and as I said, I have several posts to share about school! It's just taking me a while to write posts because I'm so worn out and a little out of it from all the medicines I'm having to take.

Here are some great blessings lately despite all that's going on:

  • Being able to take three classes
  • Being able to live in the dorms (I do go home a lot to rest)
  • Living so close to home so I'm able to go home to rest when I need to! Living 8 minutes from campus is such a blessing
  • Having such a great, supportive family who fights for me
  • Having such a wonderful church family who prays for me constantly 
  • Having such great friends literally all over the world
  • Getting encouraging comments, emails, and facebook messages from people all over the world who have found my blog
  • Being able to get medicine that helps keep me more comfortable  
  • Being able to encourage others with chronic illnesses because of what God has taught me through my illness

Here are some specific things to pray for. People always say that they want to know specifically what to pray for, so here you go! I can't tell you how much I appreciate the prayers and encouragement.

  • Answers about the virus I have, and that if it is Mono, that it will go away soon since I've already had it for at least three weeks
  • Answers and directions for us to figure out what is going on with my hands, and that if it is Rheumatoid Arthritis, that we are able to find a great rheumatologist, since you know how hard it is to find supportive doctors
  • Peace and rest for me- I'm physically and emotionally worn out from this journey, and am ready for a break. But God is giving me the strength to continue! 
  • Peace and rest for my family and friends, but especially my family- it's so hard for them to see me hurting and sick, and that they aren't able to immediately fix it. They also deal with so many medical bills and have to fight the insurance company so much because they don't pay for a lot of my treatments because "Lyme doesn't exist". 
  • Complete healing- God has the ability to heal me from all these problems if that is His will on this earth, no matter what the doctors say! He is so much bigger than anything we face. 

I love these verses and they are so true all the time, but especially right now. 

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed."
 2 Corinthians 4:8-9

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 16-18

Thank you again for the prayers and encouragement!!!