Exhaustion

I haven't been able to write the last few weeks just out of sheer exhaustion. I've had a few things going on and ended up with several doctor's appointments almost everyday. I didn't really try to schedule 2 appointments or more on the same day, now scheduling appointments everyday is just too much.

Let me think. I had the stress test last week. Well, tried to anyway. I lasted a whole of 4 minutes at a moderate walking pace and just pooped out and couldn't go anymore. My heart rate shot up to 140 and my blood pressure rose to 140/90. Since they Cardio couldn't get a good reading they're going to induce me chemically. I'm kind of scared about that, but it's done at the hospital so I guess it's in a controlled environment with all the necessary equipment should anything happen.

I also started seeing an Allergist/Immunologist to test for Mast Cell Activation Syndrome. The allergist wanted to rule out a few other things like Eosinophilic Esophagitis and Celiac Disease, both of which have come back negative. I had a histamine blood test yesterday and today I'm collecting urine sample for the tryptase test (sorry TMI?). We'll see what happens. No matter what, food avoidance will be part of the solution and so far some of the foods I can't tolerate are: rice, corn, lactose, yams, wheat, eggs, tomatoes, shellfish, yogurt, chicken, ground beef. I also can't tolerate probiotics, atenolol, antibiotics except penicillin, NSAID's specifically Toradol, any narcotics or opioids...I'm sure I'm forgetting some stuff.  The funny thing is he said Mast Cell Activation Syndrome is "very rare, extremely rare" and that "there are rumors that it is linked to EDS but that is extremely controversial". I'd like him to visit the Ehlers-Danlos National Foundation Forum and see that we seem to have our fare share per capita, extremely controversial or not!!!  I'm not seeking this diagnosis specifically, I'm just seeking answers to why I have so many allergies. They have to be coming from somewhere. I think IBS is the Fibromyalgia of the stomach. I also need to be able to get nourishment because right now I'm severely undernourished and dehydrated, and weight has nothing to do with it; I will however note that I have lost 12 lbs in the last 4 weeks. I have been hearing nasogastric feeding a little too often lately...

While I was at the Allergist, he also had me do an Incentive Spirometry just to have a baseline reading on me. My reading came in pretty low. So he had the tech give me a breathing treatment with albuterol and repeat. It came in 10% worse than the previous reading. I have been feeling tight chested lately but not enough to need my inhaler, just tight chested in passing, like with walking or other activities. So, the reading might indicate the beginning of COPD. Geez, when it rains it pours! He didn't make any changes then, but said "we'll talk about it at my next visit".

It seems like EDS has taken EVERYTHING from me. It has affected just about every system in such a short amount of time. My head/brain with daily migraines with auras, mental fog and concentration problems because it affects neuron connections (neurons require collagen to make connections). Mood disorder due to a medical condition through dealing with an extremely painful chronic medical condition that waxes and wanes according to pain level and systems affected. It has affected my intestinal tract through GERD due to the laxity of the sphincter that controls the opening of the stomach. Gastroparesis, due to the laxity of the intestinal muscle which has caused poor nutrient absorption and slowed or stopped movement of waste. Lung and respiratory issues through difficulty breathing, shortness of breath, frequent respiratory infections and now symptoms of COPD. Diffuse joint pain: toes, ankles, knees, back, neck, shoulders, wrists, fingers. Also, easy bruising, intolerance to sun, De Quervain's, possible Mast Cell Activation Syndrome, food intolerances, multiple medication allergies. Osteoarthritis of the spine resulting in a fusion and the possibility of a future surgery...well, the list goes on.

I wish I could be more cheery. I wish I could just be one of those people that always looks on the bright side and doesn't let things get them down. But you know what? This is depressing. This does suck. Right now I'm thinking that I would love some chicken noodle soup from scratch becuase I make some mean chicken noodle soup. But, then I think, I have no energy to make it. It's not laziness, it's just outright no energy. It would require the effort to stay in the kitchen standing up, chopping things while I'm ready to fall asleep. I would rather not eat at all. Also, I can't really eat the chicken or the noodles so what's the point...Is this something that I should be cheery about? NO! It sucks!

Let's see how I feel tomorrow. Tomorrow might be better.