I am a science experiment...

I am a science experiment. That is how I feel. My appointment with the allergist didn't give me answers, it brought more questions. They can't tell if I am allergic to sulfa drugs because I have never taken them. At this point we have to determine if I should just try the drug, or just not try it. I now need to call the ophthalmologist. I am thinking that I may just want to go see the specialist at this point at UCLA. They may be better equipped to handle my case. I don't know.

My father wasn't forth coming with how he reacted to the medication. He does have the blistering reaction to sulfa, as well as does my grandfather. I don't know if that makes a difference. My parents noticed the reaction in my brother before it went beyond hives, and so I we don't know if he does have the syndrome with sulfa drugs as well. So now armed with that information I am going to call the other Dr, and see what he wants to do. In the meantime, I am just one big science experiment.

Tired of being Tired...

I am tired. Tired and sick. I went to bed at 8:30 and woke up at 5:15, and could have probably slept until 10. I have horrible acne all over, not just my face now. I have no clue what is going on with my body. I am hormonal and seem to cry at everything. I don't know if that is because I am tired and run down, or if it is because of hormones.

I do find out today if I am allergic to sulfa. I find out if I can take the drug, and basically what the next step is. Scary thought about the possibilities of surgery, and maybe even putting pregnancy off further. There will tough decisions that might possibly have to be made today or in the next few weeks. Or I might not be allergic to the medication and I will be able to take it, and I will be able to go into full remission.

I pray that either way, I go into full remission soon. The Drs and I make the right choices for what is best, and that God guides the Drs in figuring out what the next steps are.

God's timing...

Last night I had the thoughts that if I had only just not gone to the optometrist for my yearly check-up right now I could possibly be pregnant, and they would be still talking about me having the IH, I would just be pregnant too. Yes, I went that low in my thinking. That is how much I want it, and how depressed I think I am over it. I know that I need to be healthy, but I am frustrated. I feel like I am not getting any better. The headaches are back, I am tired, and it is a struggle to get out of bed every day.

I think the hardest part was that my life plan was to have several kids by now. Be done having them and enjoying life with whatever husband God had planned for me. Well I was married a lot later than I thought I would be, and I am happy that I waited for the perfect guy. I thought we would be happily expecting our first by now, and now I am here with a disease in which I can't even do some of the stuff I used to love to do. The happiest moment of the day is crawling in to bed. It used to be putting on workout clothes or a swimsuit and getting in a workout.

Now I get questions of when are we going to have another one, at least the mom's have stopped asking because they know of my health issues. What I am struggling with is every where I look or go someone is pregnant or there is some sort of pregnancy advertisement. It is like the universe is taunting me. I know that there is a plan, and that it is in God's timing, but I am one seriously impatient person. Did I mention that I am ADHD as well?

stuck in limbo...

What a tough weekend. Felt like I didn't really have one. I essentially worked late on Friday, but it was a blast and didn't mind, and worked Sunday, and again a blast and didn't mind. This last weekend was the marathon, and I got to be there at the end for two students, both 12 years old to finish 26.2 miles. What an accomplishment. Something I haven't ever done, and would love to try, but know that at the moment it isn't physically possible.

Today I woke up with a horrendous migraine. I have had more headaches as of late. I don't think the medication is working any more, and the side effects are worse, and at this point it isn't even doing what it is supposed to be doing. I go to the allergist on Wednesday to find out if I am allergic to the other drug.

I have had weird cramping in the lower abdomen region as well, and have been super sleepy, yet not sleeping well at night again. My clothes are loose again, and I am back to not being able to eat all day until dinner time, and even then it isn't very much.

As I was waiting for the students to come in I was able to have a conversation with a man from another school, and what a blessing. He prayed for me, and blessed me. A perfect stranger. No judgement on his part, in fact understanding, questions, and no offering of what I should do. Just I will keep you in my prayers. God placed in my day yesterday as a way of getting me some church without being in church. Both of us were supposed to be at church, and he said we were at church. Part of being a Christian is being in service to people, and we were providing a service yesterday.

I may not feel well, and I may not have got the rest this weekend that I wanted, but it was worth it. I was there to support teachers and students who were on a journey to see what they were made. They accomplished something that most people can't. That I can't. It was worth it. Now I just need to get through the week. I am Cycle Day 13, having some weird feelings which are most likely due to the topmax, but I just feel like I am in limbo. Many around me with babies, or going to have one, and here I am stuck in limbo with a disease with no cure or cause.

tired....

Yesterday was a long day. We had open house at school, and of course it meant a 12 hour day at work. Now I am so sleepy, and my feet are giving me the same problem they were giving me last weekend. So tennis shoes for me today. The issue is I have to drive myself and the marathon students and teachers to downtown for the marathon expo. Oh well, another long work day, but one more day of work and I will get a whole 10 days off. I can't complain.

What I do wish is that this tiredness, this feeling of unwell is because there is a little one on the way. There is a deep ache because of this not being true, but I will get through this. I have to take it a day at a time, and focus on getting healthy again. I meet with the allergist on Wednesday to discuss the possible allergy issues which will determine the next line of treatment for me.

My positive thought for the day, if my friend who is facing the most trying time of her life with breast cancer can see the positive in her situation, I can be positive about mine. Through God I can get through anything, I have strength in him. I am contanstly reminded of my favorite choir song these days, My life is in his hands, I think I will go listen to it.

this is my life?

What a crazy few months. I have been diagnosed with a rare disease called Intracranial Hypertension. They don't know what causes it, and there isn't a cure. You can go into full remission, and never have another symptom, or you can have symptoms for the rest of your life. It is has been a tough pill to swallow for me. One thing being told that we can't actively try for a baby. This has been hard because one of the things I have always wanted to be is a mom.

It seems that left and right these women around me are announcing that they are pregnant, and here I am suffering through a disease that I don't know what is going to happen next. I am no longer in control. I am not getting any younger either. There are days where I feel defeated. Then there are days where I feel hope. I question why some women are allowed to be mom's, and I am not. I don't understand it most days, of any day. It is hard thing to understand.

So many days lately it is very hard to get out of bed, I am so tired. I don't know if it is the meds they have put me on, or if it is the disease. For the last month we thought I was pregnant. We thought wouldn't it be something. When we are focusing on something else, and it just happens. The topamax has really messed with my system, and my hormones. I was told by the ophthalmologist that I am going to need to come off that med, but that the med they want to give me, Diamox, I may not be able to take because I might be allergic to it. If I can't take that, then I am looking at surgical options at this point.

The hardest part of all of this, watching family and friends add to their family as my husband and I sit by and watch them. We are happy for them, but wish deep down that it was us. We both thought that at this point we were the ones that would be on that path. Instead, with every day that passes and I am not better it seems like that dream is further and further away.