Friday, April 30, 2010

Doctor's Appt - Primary Care

I must find a new primary care doctor. I had this silly idea that ones primary care doctor should coordinate your care between specialists etc. I apparently am far from correct.

I had an appt with my primary care doctor yesterday for a blood pressure med refill and to get my Vitamin D levels checked (per a request from my CFS/ME specialist).

I found out that they have not read or observed ANY of the notes that this specialist or my urologist (for the IC) have been sending over after each appt. - they simply scan and attach to my file. The first thing the doctor said to me - when I told him about my most recent diagnosis was "you certainly appear to have many ISSUES but it appears you are being well taken care of by all of these specialists". When I mentioned the cough I have had for 2 weeks now (which is getting worse daily) - he said "well that's probably related to one of your ISSUES" and never even checked my lungs. In reality he must have used the word "ISSUES" ten times - I literally wanted to scream. I DON'T HAVE ISSUES - I have illnesses/syndromes. Is it too much to ask for my PRIMARY CARE DOCTOR to treat a cough or a sore throat? Should I have to run to my specialist for such things? He even said - it's a good thing you are seeing specialists because you care would be too complex for us. When I told him about the CFS/ME diagnosis - I swear he almost rolled his eyes.

So, it's time to find a new primary care doctor - since I have so many "ISSUES" and all.

Wednesday, April 28, 2010

Medication "Choices"

As I mentioned before, my doctor wanted me to try a "trial" of Neurontin. He started me on 300 mg - once per day, 5 days, then increase. I took for 3 days (at 300mg) and was unable to function. Between sleeping and resting I was down for 18-22hours, I could not drive, and fell in the kitchen at one point.

My husband was gone most of this time (hanging out in the neighborhood etc. - and even when he's home, he's in our room, instead of the family room) - so he chose to "ignore" how difficult a time I was having. Or perhaps he thought I was just having a bad spell, I have no idea.

On Monday, I left my doc a message stating it wasn't going to work, explained my symptoms, and said that I would just wait for my next appt (in 1 1/2 weeks) to discuss any more meds.

My doc left a msg at our home last night stating that yes I should stop taking, that he was "surprised" that it had effected me so seriously, that I was apparently EXTREMELY med sensitive, that he had started me on a dose that was 1/3 the dose that most people begin on and 1/10 what most people take daily.

Wait for husband heard the message first and FLIPPED out on me. First, apparently I should have told him that I had decided to not take anymore before I called the doctor. Second, apparently he feels that perhaps I was overstating my side effects since it was such a low dose and that I didn't give it "long enough" to work. All he kept saying was "I'm just trying to understand" (rudely of course).

So NOW he shows interest?

So now, that little voice in my head (that I HATE anyway) is saying that my husband doesn't believe me, that my doctor thinks I'm crazy and that he doesn't believe me, and that I'm not trying hard enough!!!!!

I personally was not surprised that I couldn't tolerate it. I've always been med sensitive and tried a trial of Lyrica for my IC pain previously, got up to 75 mg and couldn't drive or stay awake. It seems that NOW, I'm even more med sensitive. I don't know if it's because physically I'm so weak that my body just can't handle anything else or if it's because of the CFS/ME but regardless I sure wish that little voice would shut the **** up!

Tuesday, April 27, 2010

Gripe Session

I need to have a gripe session. I promise to keep it brief, and I truly hope not to offend ANYONE, but please remember these are my current thoughts due to my situation and this is the only place I have to vent them.......having said that........

Do you ever wish you had been diagnosed with something else? Anything else? If I had been diagnosed with another disease that was well heard of and well understood, I don't believe for a moment that my family would still expect me to work full-time, take care of them, listen to their problems, and pretend like nothing is going on. Wouldn't they call to see how I'm doing, wouldn't they bring over meals, wouldn't they support every decision I found I had to make for my health?

But for some reason with CFIDS, they choose to keep their head in the sand, to make no effort to UNDERSTAND, to ignore what is so obvious in front of them. In some cases, they choose to simply not believe or to pretend that certaintly I will bounce back any day now.

They expect me to hold off on cutting back hours until this goal has been met, until this has been sorted, until THEY are ready. They get upset when I have to tell them - no I can not help you with X or be there on this day, or even listen to you whine on the phone for an hour about your problems, but yet NEVER ask how I am.

Fortunately, fibro is a bit more understood now (I'm certain due to a particular drug that is being marketed for it, but still at least it's being accepted), but with CFIDS there is no drug, there is no advertising, there is just alot of disbelief. In fact, I have a family member, who has a friend with Fibro, she will call ME to complain about something because she doesn't want to bother her friend who is suffering so greatly with Fibro - (anyone else shaking their head?).

I just want to be treated equally, I want to be understood, I am sure I am expecting too much.

Monday, April 26, 2010

Symptoms Updated

My hand is better this afternoon, I think it's just badly bruised..............

I randomly like to list my symptoms so that I can track what is going on - so as of today - these are the symptoms I have daily (never goes away, etc.):
Fatigue (not refreshed by sleep - worse after exhurstion)
Chronic Sore Throat
Muscle and/or Joint Pain
Neck Pain
Frequent Urination (of course, I had this before with the IC)
Heat/Cold Intolerance
Painful and/or Swollen Lymph Nodes
Swelling/Fluid Retention
Shortness of Breath
Severe Allergies (again, not a new symptom)
Sensitivity to meds, inhalents, odors and foods
Flushing of face
Eye Pain
Weight Loss (over 10% at this point)
Tendancy to bruise easily
Confusion / Inability to think clearly
Concentration / Attention Deficit
Muscle Weakness
Memory Problems
Alcohol Intolerance (this is an understatement)
Coordination Problems

Quite a list..........and I wonder why I feel like crap so much.

Seriously, I think it's good to know what symptoms come with this - so that I'm not freaking out over every little thing - but it does certainly make for getting through the day difficult and I feel somewhat justified in that feeling now.

What the Heck????

OK, I know I'm more "fragile" now, I've lost a significant amount of weight and was barely in my weight range to begin with - but..................

I have always had problems with my right hand. My doctor has found multiple tender/trigger points in it. It is not carpal tunnel (which is what I always assumed). I did NOTHING this weekend - in fact between sleep and resting I was down for 22 hours yesterday. However, my hand flare-up was pretty bad. At one point I had to get my daughter to open my water bottle for me.

This morning, I barely smacked the puppy on her rear for stealing one of the cat's food and now I swear either I have sprained the heck out of my hand or broken a small bone. It is swollen and bruised already - and only truly hurts (on Ultram) is when I straighten it out. If it's not better by this evening, I will go for an X-Ray, but what the HECK???

Lee Lee mentioned in a previous comment about doing tissue damage to your body by overdoing it - now I wonder, if this isn't how this incident happened so "easily". Meanwhile, I still have a cough, but resting all weekend did help the I'm going to die feeling. Yes, I'm back at work - I am fully ready to take a couple of weeks off (at least) and then try to come back with reduced hours - BUT, now my husband's job is in I'm hearing from him, that I MUST hold off until we find out for sure...............what the heck!!!???

Friday, April 23, 2010

Headed for a Crash?

So I'm feeling really sick. I don't believe it's what my daughter has by any means. First, it's too soon for me to have caught it from her and our symptoms are different. So either I've caught some other bug or I'm headed for a crash.

Since yesterday, the sore throat has increased significantly, I have a dry cough and just feel even more run down than usual. I'm drinking lots of fluids and taking Musinex just in case - but honestly I think it's a crash. The muscle aches (in the same places that normally bother me) have ramped up significantly as well.

At work now, but not sure for how long...................

Thursday, April 22, 2010

My Daughter is Sick - Oh No

I had to leave early yesterday to take my daughter to the doctor. She felt so unwell, I had to pick her up from work and drive her myself. She has a horrible virus.............I am a bit worried about me catching it to be honest.

So how do you handle it when someone in your family is ill? I have washed my hands so much they should be cracking, I have used clorox wipes until there are no more left in the house. If I catch this - I don't even want to think about how far it will set me back.


Otherwise, holding up ok today (surprising since it's Thursday) - but so far I'm functional at least. My "big" bosses are gone for the rest of the week, so I'm hopeful I can make it through this week. Next week is going to be quite busy, so I'm thinking I may go ahead and request a slower day off - rather than take the risk of having to call in.

I've been lying down in the file room for 20 minutes each day, the main issue is that the floor is concrete (with carpet layed on top), I wish I could find a more comfortable place to "hide". It's become a necessity now, especially on busy days to get through.


I spoke with my doctor yesterday and we are going to try Neurontin. I'm a bit nervous because I have tried Lyrica in the past and while it was a great pain reliever for the IC, I simply was unable to tolerate it at a therapeutic dosage (enough to help with my pain - only 75 mg). But, you never know until you try. He has allowed me increase my Ultram so that is a relief. (Yes, I know it can be habit forming, but I honestly don't care, I look at as a necessity also, and will safely discontinue should I ever get better - and if I don't improve, I have no problems at all with having to take for the duration.) Currently, I am taking Ultram (200 - 250 mg per day), Dioxipine 10mg at night, Valium 5mg 2x's per day (for PFD related to my IC), Blood pressure meds (2), and my daily bladder instillations. I am literally a walking pharmacy.

Wednesday, April 21, 2010

Wednesday Again.................

So it's Wednesday AGAIN and I feel horrendous. Yesterday morning was very busy at work (lots of running around for the "big" bosses, fetching coffee, printing documents etc. - mainly increased movement out of my office chair). At one point, I HAD to find somewhere to lay down and went into the file room and layed on the floor for about 20 minutes. It helped enough that I was no longer concerned about driving home at least. But today I am feeling it - for sure.

Wednesday appears to be my crash point during the work week. I am going to play it by ear and perhaps leave early today. I truly hate to have to take another day off work - quite yet. I'm waiting to hear back from my doctor regarding a med check phone follow-up and am going to request an appointment soon, so we can discuss how quickly I'm getting worse, and to get something in writing for work. (They haven't requested it by any means, but I've been here for 7 years and know well how the politics go - so it would be for MY best if there was something in my file).

Tuesday, April 20, 2010

Complications of Having Multiple Chronic Illnesses

As some of you know, prior to my recent diagnosis of CFS/ME I was diagnosed in 2004 with IC (Interstitial Cystitis). I have had high blood pressure since my early
20's. Additionally, I've had severe allergies since I was a very young child.

Unfortunately, all of these things either increase symptoms or complicate medication choices.

Prior to my becoming sick last fall with what I now know is CFS/ME, my IC symptoms were pretty well managed. Between a strict low acidic, low alkiline diet and bladder washes (I put medication directly into my bladder), I only had the occasional flare up (normally related to horomone cycles, having sex, or "cheating" on the diet). It rarely put me "down and out" any longer.

Now, IC and CFS appear to somewhat "feed" off of each other. It appears to be a constant battle between which one is going to hit me hardest that particular day and which one is going to cause the most pain that day. It's a vicious cycle that I can't seem to get out of, literally if I push myself with CFS, then my IC symptoms increase, if my IC symptoms increase then my CFS symptoms increase.

My allergies increase my IC symptoms. (There is a theory regarding histimines and mast cells in the bladder.) Now my allergies also increase my CFS symptoms.

With the high blood pressure, I am unable to try many medications (look at your side-effects, how many say "may" increase blood pressure) or have had to discontinue many meds because they did in fact increase my blood pressure.

Many of the meds that you try with CFS (Lyrica for pain, Elavil for sleep etc.) I have already tried with the IC. Fortunately, I had a very understanding specialist who is familar with IC, otherwise, could you imagine me going to a "regular" doctor and saying well I can't take that, or that, or that....................yeah, might not have worked out so well.

More importantly though, is the discouragment that I occassionally feel now that I have two chronic issues which cause sleep disturbances and daily chronic pain. It truly feels somedays like my body is in a constant fight with itself.

I know that many of CFS patients have multiple diagnosis which I find interesting. I wonder if someday they will ever determine either why we are more suspectible to these syndromes/disorders or if there is a genetic link.

I do know that I have the following genetic issues: (1) My daughter has IC also (2) My maternal cousin has FIBRO (3) We suspect that my maternal grandmother had undiagnosed CFS (for numerous reasons); (4) My mother is currently having some neurological issues that they can't identify a cause.

I doubt that any of these things are not connected somehow.

Monday, April 19, 2010

Technical Help

OK - I need some technical assistance - LOL. Does anyone know how to make my email address accessible to readers (in Blogger), but not actually show it?

Thanks - I'm learning I might be a little technical challenged.

I deleted my post

Well, if you missed the wonderful post where I learned yet AGAIN that one can not drink, when one has CFIDS, it's because I managed to delete it.

Let's just say that one glass of wine + cfids = 3 horrible days and not worth it at all.

Friday, April 16, 2010

Learning to Put Myself First

I had my bi-monthly appt. with my therapist on Wednesday - and we spent the entire session discussing my health and how I must learn to put myself first. I have been seeing this therapist for a year now (unrelated things), and she was beyond alarmed by my physical appearance on Wednesday. (It's been about 3 weeks since I have seen her.) I have lost a ton of weight (that I did not need to lose and it is still coming off), looked exhausted and had no energy.

Honestly, I had to come to come to grips that those lovely vows of in sickness and in health may not apply to me. (There is a lot more background that has not been documented here and my counselor is aware of it all.) It is sad, feels lonely, but I need the truth so that I can make decisions for myself. Therefore, unfortunately, I am attempting to put up a wall in order to allow myself to put myself first.

I'm sure I don't have to tell you my personality, it appears to be very typical of us that are unfortunate enough to come down with cfs. Type A - People Pleaser - you know the drill. It's hard to turn that around and become selfish (for lack of a better word).

I will not allow ANYONE to make me feel guilty any longer for activities and social events I am not feeling up to attending. When my doctor and I agree that I need to cut my work hours back, I will for me, and will not let anyone make me feel guilty for that choice. (I will speaking with my doctor within the next week). If later we decide I need further cut backs - I will also move ahead with that, period.

I am planning (I am the only one planning which has caused some resentment on my part, but again that wall is going up, and now I'm doing it for me), I am putting money away in savings, paying off as much debt as possible, anything I can think of to make life a bit easier for ME, when I need to cut back or take some time off. I no longer see it as "IF" but "WHEN".

Knowing, I have the support of my employer is a huge load off of of me. However, I am aware that they will not be able to hold my position for me, if I have to go out for an extended amount of time. (My position is too essential, and it truly would create a hardship for my company, which I understand.) I do have their full support to leave early if I'm feeling really badly, to come in a bit later with no recourse, to take the odd day off (with notice the day before if possible) to help prevent a crash. They also offered to reduce my hours - but 30 hours would be the minimum they would be able to work with. I appreciate the honesty and the flexibility. Plus, it no longer feels like I'm hiding.

I didn't ask for this, I never wanted this, why should I feel guilty? But I will again, I know, but I will do my best to remind myself of what is important. As my therapist put it: "All the people adding to my burdens, making me feel guilty, and not understanding, will still be going on with their life 5 years from now, but if I don't take care of myself, where will I be?"

Wednesday, April 14, 2010

I bit the bullet

I spoke to my supervisor, it went surprising well and I am taking tomorrow off work. I will have more details later - but I am quite relieved to be honest. At least, I'm not completely "hiding" any longer.

Today is a Struggle

I forced myself out of bed this morning at 6:10 a.m. to make sure I wouldn't oversleep again. I managed to mail off our taxes on my way to work (which is good because they have been riding in my car for 2 days now). Now I am exhausted and it's only 8:30 a.m.

I feel that I am going to have to say something to my immediate supervisor today - it will be as vague as possible, but just to open the discussion regarding my constantly being late (before they approach me) and because I feel so absolutely horrible today that I am sure I will not be able to be here tomorrow.

I'm wearing down, no doubt about it.

Daily Current Symptoms (these are consistent symptoms - I have other symptoms that come and go also):

1. Unrelenting Fatigue (Intensifies throughout the day and it's VERY hard to get out of bed in the mornings).
2. Increased IC/Bladder Pain
3. Muscle Aches/Burns (Primarily my arms, back [mid and lower], hands, shoulders, and head)
4. Limb Heaviness (Primarily my arms and legs - somedays my legs literally feel like I have weights attached to them).
5. Pain or tingling in my feet (soles and all over)
6. Sore Throats (can range from mild to unbearable)
7. Memory / Focusing Problems (intensifies throughout the day)
8. Poor Sleep
9. Face Flushing
12.Depth Perception Issues (I run into door frames and walls ect - it is like my mind can't tell where they entry is for sure).
13.Constant feeling of just being unwell (similiar to you feeling as if you are definately coming down with something - everyday).

Tuesday, April 13, 2010

Multiple Chemical Sensitivity

First - to give any fellow PWC a chuckle - I had to look up on google how to spell sensitivity for the post title - 5 months ago - I would have had no problem at all.

Moving along..............

Cusp (thanks again) - mentioned in a comment about being aware of chemicals etc.

I have recently noticed (within the last 2 months) that I am more sensitive to certain chemicals and sounds. I am no longer able to use many cleaning solutions - I used even 4 months ago with no problems. Several women in my office wear perfume, previously I never noticed it at all, now it will send me into a blinding headache, burning eyes, gagging, dizzy nightmare.

Is this normal for CFIDS are does it travel along with it? Previously some chemicals (namely bleach and any other STRONG chemicals) would cause increased bladder pain for me - but this new symptom is quite alarming. Especially since it seems to be increasing (along with everything else of course).

Daily Routine

Here is an example of my current daily routine - I doubt daily how long I can continue at this rate, but wanted to document where I am today:

6:30 a.m. - Supposed to Wake Up
7:00 a.m. - Actually Wake Up (Supposed to leave my house no later than 7:15)
7:15 a.m. - Actually out of bed
7:30 a.m. - Leave for work
8:15 a.m. - Arrive to work (late as usual)
I have a "desk job", but it's highly stressful and demanding. I support multiple VP's, plus have far too many responsibilities.
5:00 p.m. - Normally getting off work (I have been really trying lately to not work any later than this)
5:45 p.m. - Arrive Home and CRASH on couch
6:45 p.m. - Think about dinner, if I cook it's from a box and 15 minutes or less, or fix a sandwich, on a "lucky" night my husband will cook.
7:15 p.m. - Bladder instillation (I am supposed to shower before each one - but I am lucky if I have the energy now to shower twice a week).
8:00 p.m. - CRASH again
9:00 p.m. - Drag myself from the couch to the bed

** Wash and Repeat ** Monday through Friday

Weekends consist of:
Saturday - I will go see my mom, and handle whatever she needs (sometimes its a quick trip to the grocery store, other times I may just take her for a quick breakfast or lunch, sometimes its just to visit) - I stay about 2 hours - and then CRASH for the remainder of the day.

Sunday - I "may" do some light laundry or light cleaning for no longer than 1 hour and then CRASH for the remainder of the day.


Most days I feel like all of my energy is being "wasted" on work. I used to love my job, I excelled in it, but I never intended for it to be the ONLY part of my life and now it is.

I have not yet, spoken to my employers regarding my new diagnosis (they are aware of the previous IC diagnosis), I have been with this company for 7 years and have truly been a good employee but this environment definately encourages total commitment and long hours, to say I am nervous would be an understatement.

My doctor would like for me to reduce my hours to 30 hours per week. I would like to at least reduce to 32 hours a week (I would imagine a Wednesday off would be most beneficial to help me get through the remainder of the week). I am meeting GREAT resistance from my husband on this subject but have pretty much decided it is no longer "his" decision.

So, honestly, how do you approach an employer with this information? The statistics are alarming regarding disability and I'm afraid they will automatically assume that I will end up disabled as well, and therefore be reluctant to accomodate me. I know there are laws, but we are a small company in the US - most of the "laws" do not apply.

Also, the private disability route alarms me, the company we use is well known for denying claims in general - especially "self-reporting syndromes". I am the primary breadwinner in my home, I am truly at a lost.

So, my daily worry comes down to what is the best route for me to take and hopefully maintain some income, and not meet the total CRASH of CFIDS? How do I approach my employer and when is the right time to do that (probably soon since I'm constantly late now)? How do I get family members (ie. my husband) to understand that even though I am "newly diagnosed" (he feels it's "too soon"), that I am literally falling apart and truly need to cut back? Would I be better to try a short break completely instead of reduced hours?

CFIDS sucks!

Monday, April 12, 2010

A new diagnosis - lucky me.

Being diagnosed with interstial cystitis (IC) in 2004 should have prepared me for my future, but now with a new diagnosis of chronic fatigue immune difficiency syndrom (CFIDS) my life has begun to spin out of control.

My friends and family appear to be having difficulity accepting that I am now even "sicker" than before, more difficulity than me to be honest. The daily frustrations are mounting. I am trying the daily dance of working full-time, managing a house (where fortunately everyone is an adult -in theory at least), helping to care for my disabled mother and learning my limits.

Everyone talks about pacing - I ask you - seriously, how do you pace this life?

My symptoms began in early October 2009, and I was diagnosed in March 2010 after having numerous tests etc. to rule out other causes. I am apparently in a fast decline it appears, this blog will document this road I find myself on now, and the decisions I am sure I will be faced to make.