Not Fair

 I had my follow-up appointment on Wednesday up in Pennsylvania. The day started okay. I left early because I had never been to the office before and even with GPS, I have a propensity to get lost. I made it to my appointment a half hour early. They drew blood and did an EKG and then I saw the doctor.

Dr. O was upset because I gained back 18 pounds of fluid that I was able to shed while in the hospital. The excess fluid puts pressure back on my heart and lungs. She stopped my Lasix and started me on Bumetanide, which is another fluid pill. She said I could come back in a month, then she would discuss my case with the PE surgery team. Then I would have one more appointment to discuss a surgery date.

I felt great about that. That meant that I could have a great Christmas with my kids. We could an awesome day together and create an amazing memory. As usual, I was wrong.

Dr. O called me later that evening to tell me that my INR (coumadin level) was too high so she adjusted my dose. That's no big deal, I've had to have that adjusted before. Then her tone got serious. She's concerned about the fluid, and on Tuesday she is going to discuss my case with the PE team and see if they could do the surgery next month instead of January.

I got hysterical. I cried. I called my Aunt Carol who is my voice of reason these days and always points out things that I don't see because I get too emotional. She calmed me down and brought up the fact that nothing is definite yet. The surgery team may not be available due to Christmas. The surgery team may want to wait the month to see if I can shed the fluid. All of these are reasonable things and could happen.

Despite every thing that has ever happened in my life, I have never been one to cry and say things are not fair. I generally just clean myself off and push forward. This, however, is not fair. I have accepted this surgery, and even though I don't like it I am going to go through with it. 

All I wanted was Christmas with my kids. I want them to, if God forbid anything happens to me, have an amazing and great memory to look back on. I don't think that is too much to ask for. So for once in my life, I'm calling it NOT FAIR. My kids have been through a lot the past few years and they deserve a fantastic day.

Now all I can do is wait for Tuesday and hope things work out in my favor.

Limbo

I am in limbo and it's frustrating and maddening and annoying. It makes me angry and depressed. It makes it hard for me to find joy in the little things.

In the end of January/beginning of February, I noticed this weird numbness traveling from my right foot up to my right hip. It was very sensitive to the touch and if I put anything cold on the numb areas it felt like they were on fire. I assumed I had pinched a nerve until my vision started getting blurry. My first thought, since I am not the healthiest woman, is that it was probably diabetes. I figured if it was diabetes my sugar was so high it was affecting my nerves and my eyesight. I also had pretty horrible fatigue.

I made an appointment with one of the doctors in my primary care office. Dr. NH sent me for some blood work. I was tested for diabetes, thyroid, anemia, and abnormal blood counts. (I also had my coumadin level checked as I am on that for life but that is a different story.) No diabetes, no anemia, no abnormal blood count. My thyroid was slightly abnormal but she didn't feel it was anything to worry about and was going to do a recheck in 6 weeks. Since she told me not to worry about it, I didn't.

The fatigue got worse. Much worse. I could sleep a good six or seven hours, get out of bed, do some things around the house and if I sat down for longer than fifteen minutes I would fall right back asleep. Then the numbness in my hands started. Both hands are stiff, numb, occasionally tingly. I figured it was carpal tunnel syndrome.

March 2nd I went back to the doctor for a one month follow up. By this time my hands and forearms were numb. My entire torso from breasts to waist and around to my back were also numb. It feels almost like I spent a week wearing a shirt five sizes too small and just took it off. When I nod my head forward I get this weird shocking sensation across my lower back and the tops of my feet.

I saw Dr. SH this time. He was really nice and listened to all I had to say. I told him how I had Googled my symptoms and instead of telling me that I was dumb and I shouldn't do that, he said it was good that I was asking questions. I told him that I thought I had MS. He disagreed. He said that looking at my thyroid lab being slightly abnormal that he thought it was the thyroid causing my body to go all crazy. He said that he wanted to treat that first, and if need be, rule that out as a cause of my problems. Rather than go through a ton of expensive testing that might be useless, we were going to try thyroid medication. (Irregardless of anything else, my thyroid is screwed up and needs to be treated.)

The next day I started on Synthroid. The numbness at that point spread up the left side of my neck and behind my ear.

March 5: Numbness spread up both sides of my neck and the bottom edges of both ears.

March 7: Numbness spread down my neck into my shoulders. I can still lift my arms up but they both feel heavy.

March 14: Both ears are almost completely numb. Both sides of my face along my jawline are numb now too.

March 18: My right cheek is almost completely numb and the right corner of my mouth as well. My middle finger and ring finger of my right hand are more numb than usual.

I discovered that hot showers or hot water in general make my hands, arm, and facial numbness worse. They seem to go back to a normal level of numbness about a half hour after my shower.

Today I started feeling a sensation in my arm like I had laid it down on the desk and it was wet. It wasn't and neither was my arm. I keep getting a creepy crawly sensation on my legs like a bug is crawling on me. There is never a bug and it isn't constant.

Everything I keep reading points to MS. My doctor wants to give this medicine time to get fully in my system. As of today I have been on it three weeks and the medicine takes four to six weeks to get to a therapeutic level.

Not one of my symptoms have even slightly changed since starting this medication. This leaves me to believe that I really do have MS or something else.

I am so tired of being tired all the time. This not knowing for sure, not having a 100% sure diagnosis, is driving me crazy. It's making me angry, ultra-sensitive, more depressed. Dr. SH might have to up my happy pill dose. I cry a lot. Usually in the shower or when Bruce isn't home. I don't want him to see how scared and worried I am.

I just want to know once and for all what is wrong with me so I can get to the business of dealing with it. I am tired of being in limbo.