Feeling Down and Stressed

I've been feeling down since yesterday. (I haven't felt this down in a while.) I've figured out that there are a number of reasons why I'm feeling so blue.

• Work has been especially challenging. We had a big turnover recently, and I miss many of the people who have left. Because I don't have a life outside of work, my "work friends" are pretty much my only friends. I've also been more stressed at work than usual because I've had to take on more responsibilities and projects now that we are short staffed.
  
  
• My energy has not returned to my "normal" energy levels in what feels like forever (i.e., months). I'm wondering if how I've been feeling lately is my new normal. This possibility disturbs me. I have been considering the possibility that I will need to quit working or, at the very least, take a leave of absence if my energy levels get any worse.
  
  
• I've been feeling physically yucky (more than usual) since my trip to North Dakota last weekend. I do not regret going, but I am wanting some relief. I have managed to ward off a major crash and I feel better today than I did a few days ago, but I am still quite uncomfortable.
  
  
• I have to take a day trip out of town tomorrow (Sunday) for my job. I am not looking forward to it because I am still physically exhausted and trying to recover from my trip last week. I really hope this excursion doesn't set me back too much. I'm feeling a lot of anxiety about this.
  
  
• And, of course, I've been singing the usual woebegone song of CFIDS/CFS/ME sufferers: I'm sick of being sick, and tired of being tired. Also, I'm sick and tired of being sick and tired.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, headache, nausea, explosive diarrhea, intestinal discomfort, asthma attack, feeling down.

Mood (10 is best): 3
Energy (10 is best): 2 (most of today), 3 (after sleeping all day)
Physical Discomfort (10 is worst): 6

Current Medications and Supplements

During one of my phone conversations with the Georgetown research people, I was asked to email them a list of my current medications and supplements. I kept putting this off until last night.

My brain fog was so horrendous yesterday after work that it took me over two hours to compose an email about my current medications and supplements.

It really shouldn't have taken that long, especially considering most of them are already listed in my May 2009 post Medications and Treatments. I think what took the most mental energy was categorizing everything into groups that made more sense AND trying to include dosage information.

Anyway, I though it might be an interesting update to my blog, so here is my (slightly edited) email to Georgetown.

(Oh, and if you're wondering why I keep talking about Georgetown, check these out: Hoping to be a Human Guinea Pig, Georgetown CFS Study, and the official research link.)

Hello!

In a previous phone conversation, Dr. R asked for a list of my medications. Unless noted otherwise, I take these medications/supplements daily.

Diagnosed Conditions:

• Allergies
• Asthma
• Eczema
• Acid Reflux
• Irritable Bowel Syndrome
• Chronic Fatigue Syndrome
• Polycystic Ovarian Syndrome
• Thalassemia Minor
• Interesting to Note: In 2008, I developed migraines and had them on and off for several months; however, my migraines now seem to have been replaced with somewhat less severe headaches that occur more frequently.

Rx medications:

• Advair 250/50
• Albuterol (as needed)
• Flonase nasal spray
• Zoloft,12.5-25mg
• Yaz
• Tandem, 106 mg elemental iron (every other day)

Medications/Supplements provided through my PCP's office (specifically for my CFS):

• ATP-20, 20 mg Adenosine Triphosphate (twice a day)
• Glyceron Plus IM injections (combination of three substances, one of which is glycyrrhizin...I can't remember the other two) - about once a week if I remember (which ends up being less than once a week).
• Glutathione IV - a few times a year, because this treatment is a bit pricey and takes a while to administer, I don't go very often for this.

OTC Medications/Supplements recommended by one of my doctors (PCP, GI, or Allergy/Asthma doc):

• Zyrtec, 5mg (10 mg if allergies are really acting up)
• Vitamin D, 1000 I.U.
• Fish Oil, 1000 mg
• Hydrocortisone (for eczema)
• Lactase (I take this only when I remember...which is not very often)
• Multi-vitamin (every other day; I take a different multi on alternate days -- see below)

OTC Supplements based on Rich Van Konynenburg's research: "Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome" (I made sure to get permission from my PCP before starting this treatment plan). I take these supplements every other day:

• 1/2 tablet of Perque Activated B-12 Guard (1,000 mcg; full tablet is 2,000 mcg)
• 1/4 tablet of Metagenics FolaPro L-5 Methyl Tetrahydrofolate (200 mcg; full tablet is 800 mcg)
• 1/4 tablet of Metagenics ActiFolate (200 mcg; full tablet is 800 mcg)
• 1/4 tablet General (multi) Vitamin Neurological Health Formula
• 1 softgel Phosphatidyl Serine Complex (500 mg)

OTC Medications/Supplements I have chosen to take based on my own research to aid with my IBS:

• Citrucel fiber supplement, 1000 mg
• Some sort of probiotic (usually acidophilus, but I have been trying different ones lately), currently I'm taking Digestive Advantage IBS Bowel Fitness Formula (which includes Bacillus coagulans GBI-30, 6086)

OTC Medications/Supplements I take from time to time (i.e., less than once a week):

• Tylenol and/or Advil for headaches; I have headaches almost every day (though most of the time I try to avoid any headache medications since I'm already taking so many other things)
• Melatonin, 5mg (for insomnia)
• Benedryl, 25-50 mg (for insomnia, but only if I'm really desperate)
• PreparationH (if my hemorrhoids are acting up)
• Monistat for yeast infections
• Athlete's foot antifungals

Medications I took in the past for migraines (but no longer take):

• Midrin
• Relpax
• Interesting to Note: I found that these medications did not satisfactorily relieve my migraines, though they did help somewhat.

Other Important Info:

• I am currently undergoing immunotherapy for allergies to: trees, grasses, and dust mites.
• I have allergies to other things including quinolone antibiotics, the glue on bandaids, and all types of earrings. I have a sensitivity to mesalamine. When I last took it, it resulted in neurological problems and hair loss.
• I experienced relatively low ferritin levels (17ng/mL) earlier this year, which is why I am on iron supplements every other day. My last few tests have ranged between 40 and 50.
• I had relatively low vitamin D levels (29 ng/mL) earlier this year, which is why I am on daily vitamin D supplements. My last three blood tests have shown levels in the 40's.

• I keep track of my oral medications/supplements by using a 7-day pill organizer that divides each day by Morn, Noon, Eve, Bed.

Please let me know if you need any additional information.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, nausea, brain fog, low fever that comes and goes.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Hoping to be a Human Guinea Pig

Disclaimer: My brain fog is acting up today, so I can't remember what I've already said about the following topic (and I'm mentally too tired to read through my blog to find out).

I'm really excited because I'm getting closer to being able to participate in worthwhile CFS research. I use the term "worthwhile" because there is so much junk CFS research out there. The more scientists know about this disease, the more likely they will be able to come up with some answers.

I've received the informed consent documents from both the Georgetown study and the University of Illinois at Chicago study.

I spoke with the Georgetown representative today and the next step is to schedule my visit to Washington, DC. The rep is supposed to email or call me later this week with available dates.

My next step in the UIChicago study is to have a phone interview. They'll call me after they receive my signed informed consent documents.

Lately I've found myself wishing more often that I were well. I've also been feeling a bit resentful toward my disease. This weekend in North Dakota was particularly bittersweet. I was able to see my family (and especially my nieces), but I spent so much time sleeping or restricting my activities that I felt left out. And that's another thing. I've been feeling left out an awful lot lately.

I think I so badly want to participate in CFS research is because I want to do my part to find a cure (or at least a treatment) for CFIDS. My reasons are selfish; I am getting desperate for some relief.

I've been sick for my entire adult life. Can't a girl get a break?!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, low fever, sore throat, achy body, brain fog.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 6

A Weekend in North Dakota

This is what it looks like to have four children, all of whom are girls...

My husband Kenny and I spent this weekend in rural North Dakota visiting family we hadn't seen since 2005. It was a whirlwind trip that was priceless and well worth the physical toll it took on me.

We flew up to North Dakota for the purpose of visiting Kenny's brother, his wife, and their four children. What made the trip even more special is the fact that Kenny's parents and Kenny's brother's wife's sister (did you follow that one?) flew up to North Dakota as well. We all squeezed in the house as one, big family. (If you haven't been keeping track, eleven of us were under one roof!) We were able to take a rare family photo.

The most important part of the trip for me was spending time with our four nieces, the oldest of which is just starting fifth grade. The youngest is less than a year old; it was wonderful meeting her for the first time. The girls are our only nieces or nephews, so we feel a special attachment to them. We love them so much! I think the attachment is especially strong because we're not sure if I'll be able to have children...ever (see Childhood Dreams).

Amazingly, I felt pretty good during the actual trip. I forced myself to take it easy and spend most of the time inside (even when everyone else was outside). I slept for at least ten or eleven hours on Friday night, and I took two naps on Saturday. On Sunday I slept on all three flights back to Texas (there are no direct flights between North Dakota and Texas). When we finally made it back home, I thought I had successfully survived a trip without any physical repercussions -- a rare feat!

Unfortunately, I was wrong. I'm now paying for our weekend excursion. I'm running a fever and the lymph nodes on the right side of my neck are hurting. My throat hurts. I'm feeling achy all over and have been slightly dizzy and nauseated on and off today. Simply put, I'm experiencing a flare up that is likely to lead to a crash.

I am trying very hard not to have a full-blown crash. I went to bed early last night, and I tried to limit my physical activity today at work (yes, work). I can't stay home from work because I have very little sick/vacation leave left, and I need to save it for a real emergency or important trip (like my possible trip to DC to be part of a research study).

Despite the physical discomfort, I have no regrets that we took this trip. To me, family is important. We're even hoping to go back next year for an even longer stay.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, dizziness and nausea, low fever, painful lymph nodes on right side of neck, sore throat, achy body.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 7

Weekend Trip & Quick Update

I've been super busy preparing to leave town this weekend. Kenny and I are going to visit family in North Dakota for the weekend (a whirlwind trip!), so I haven't had much time to write. I just want to give a quick update on the research opportunities I'm trying to pursue.

I've received the informed consent documents from the Georgetown University CFS study. The next step is a preliminary phone interview. If they're satisfied with what they hear, I'll be invited to Washington, DC for the actual research testing. There is a $400 stipend that comes with the completion of the research study, so this will help with my airfare. I also have family in DC, which is why I'm not worried about heading out there on my own.

I will be out of town for the weekend, and I don't know if I'll have time to get online. I may be too busy spending time with family or napping...

I'm just hoping I don't crash. I've finally started to get back to my normal state of tired (as opposed to extreme exhaustion).

Today's Activities: work & packing for trip. Today's Most Annoying Symptoms: exhaustion, mild headache, asthma attack, diarrhea; active eczema on left and right underarms, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 4
Physical Discomfort (10 is worst): 4

Research Alert: Chronic Illness Survey

I'm happy to be posting another research opportunity! The University of Michigan's Center for Managing Chronic Disease and Advocacy for Patients with Chronic Illness, Inc. were awarded a grant by the NIH to study how people handle chronic illness. I can't remember exactly how I found out about this survey, but it happened when I was surfing the web this weekend.

Here are the links that explain the study:

• University of Michigan
• Advocacy for Patients with Chronic Illness, Inc.

Here is the link to the survey itself:

• http://chronicdisease.survey.sgizmo.com/

If you suffer from chronic illness or are the family caregiver of someone with chronic illness, then you can take the survey.

This survey is REALLY long (i.e., at least 50-60 minutes) and asks detailed questions that require equally detailed answers, so only take it when you have the stamina. If you run out of steam partway through (which I did), you have the option to save your work and have them email you a link to the survey so you can continue it later.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, asthma attack; active eczema on left and right underarms, and right ankle. After some serious resting for most of the weekend (except when I got my haircut), I managed to avoid a major crash.

Mood (10 is best): 7
Energy (10 is best): 3+
Physical Discomfort (10 is worst): 3