God Will Make a Way Where There Seems To Be No Way

IMPORTANT HEALTH UPDATE FOR FAMILY & FRIENDS:

God will make a way
Where there seems to be no way
He works in ways we
cannot see
He will make a way for me

He will be my guide
Hold me closely to his side
With love and strength for each new day
He will make a way

Normally when I hear songs that are decades old, that were once so overplayed that the anoining just left, I get a serious nervous twitch just remembering how the radio overdosed the masses. There were times that I would cringe if I heard one more round of Celebrate Jesus or As a Deer...though lovely songs they are....they were over played until the anointing left.

Tonight, as I was sitting here collecting my thoughts about all that has occurred in the last week and trying to update my family and friends on our health sitaution, one of those songs came across Brad's MP3 player and I crumbled into a puddle of tears feeling as if God just hugged me.

God will make a way where there seems to be no way....well, that is where my hope and faith is at the moment because my medical experiences of the last week have left me wondering if I just need a good lawyer or the business card to reach Dr Jack Kovorkian!...or maybe both?

Let me assure you that I am NOT suicidal, but the physical pain has made me on more than one occasion pray that I could just die and go home to the Lord. But watching Brad be forgetful about taking his meds and supplements makes me think our kids will be left orphans if at least one us doesn't get on top of this illness...because right now it is beating us to a pulp.

The Medical Facts of the Matter:

Our doctor made a mistake...an oversite...and it has cost us dearly. Part of the conditions of long term antibiotic use for chronic infection and inflammation is that monthly labs must be drawn so as to monitor the toxicity level of the body and to watch for liver damage.

Labs are supposed to be drawn at each office visit while on antibiotics. The results of those labs are back in their office within 3 days. My doctor failed to really look over those lab results and just filed them for our next office visit a month later. That was the tragic mistake. Had he looked over those labs he would have noticed that my liver had reached a level of toxicity. But he did not look at them and kept me on the antibiotics (abx for short) for an additional month before he bothered to look at those results...well actually, he did not really look at them then either. He wrote me another prescription for abx. I noticed that the pharmacy had a made a mistake in filling the prescription so they had to call the doctors office to get verification of the instructions...it was at that time when the doctor looked back at my records caught the lab result and called me on my cell phone while I was IN LINE at the pharmacy picking up more abx and he told me to stop immediately!! He said I had a toxic liver and I needed to spend a month detoxing the liver.

Come to find out, while he had me on those abx for an additional month, my liver enzymes had climbed to a level that now I had a new diagnosis of "medicine induced hepatitis"... due to my doctor failing to read my lab report and calling me with the information about my "out of range" lab values.

It would be nice if that were the only medical issue and that it would be cleared up by stopping the meds...but nothing is ever that easy. Our doctor also told us a few months back that both Brad and I have "sticky blood", technically called hypercoagulation. This is caused by long term inflammation and liver damage. He said he did not want to treat this with blood thinners because that would just be a "band aid" for the problem and not address the real issue of the inflammation that is caused by the lyme infection...so he preferred to treat with more abx.

Well, now that he pulled me off the abx I knew the hypercoagulation problem would be more of an issue since there is NOTHING addressing the infection at this point. So I called and asked him to put me on the heparin (blood thinner) for the problem. He simply refused with no explanation other than he was not comfortable prescribing heparin (though several of our support group members who are also his patients are on heparin prescribed by him...go figure!)

So out of desperation I went to my primary care doctor and asked him to give us a second opinion about what our Lyme doc was doing...and to ask about the heparin issue. He said he wanted to speak with our Lyme doctor about going ahead and putting us on IV abx that would not be such an issue on our liver and be more beneficial in the long run towards fighting the infection. So I left his office feeling hopeful that something would get done...that was last Saturday and after 6 phone calls and ER visit later--we still have not received a phone call from our primary doc. I am developing trust issues where our medical professionals are concerned!

Ok...so you noticed that ER visit comment...yes, we had a hospital visit on Monday of this week. By Monday I was having further difficulty with breathing, major headache, difficulty with walking and tingling feeling in my face, arms and legs. So I called my PCP to see what he wanted me to do...never returned my call. I called my Lyme doc twice...never returned my call. So I called my support group leader to ask her what I was supposed to do!! She heard my mom in the back ground asking questions so she asked to speak to my mom directly.

She told my mom to call the doctors office...she put mamma bear in fighting mode and got her motivated! I guess the bad part about feeling so physically ill is that you expect when you call the doctor and tell them you cant breathe or walk well and are tingly all over that if they do not respond it may not be an emergency...so you just wait it out because you don't feel well enough to do much of anything else.

But mamma.....yep, the support group leader told mom to play the mamma card and get on the phone to the office and tell them exactly what she is seeing and what her concern is from a healthy perspective of someone who is observing the situation.

So mom got the nurse on the phone and told her this was not a situation that we could wait for the doctor to call us back after office hours on and then she described the situation with my difficulty breathing, heart racing and the heart contractions...so the nurnse immediately pulled the doctor out of a patient consult and put him on the phone with me. He told me to go to the ER immediately. BTW, my PCP still had not returned a phone call either. I guess I just need to learn to COMPLAIN more and not try to be so patient and feel like I am wasting their time! At leat my mom felt I was worth bothering the dear doctor incessantly, even if I didn't. And that paid off!

The ER visit in a nutshell revealed that I have a slightly enlarged heart and pretty severe hypercoagulation issues and that I was at a high risk for throwing a blood clot and that I needed to get immediate follow up care with my doctor to get put on blood thinners. This was on Monday.

I called both my PCP and Lyme doctor on Tues morning and again in the afternoon when I did not get any return calls. On Wednesday I went back to the hospital to pick up my ER records and faxed them to both doctors...making 2 more calls to each of their offices again on Wed...no return phone calls.

On Thursday I was packing to leave for a medical conference with 6 of the 12 leading Lyme specialists in the country...right here in Dallas! Can you believe that my doctor, who is one of the 12 "specialists" in the US did not even attend the conference??

Come to find out ofter having our support group leader and myself asking some questions of the best leaders in Lyme treatment in the country about our particular protocols with this doctor, not one of them believe he is treating this in a proper manner and his treatment plan is actually contrary to what is making progress in this illness. In fact, his manner of treatment, is actually further driving the Lyme bacteria into the brain because he is neglecting to address the co-infections, which are parasitic in nature, not a bacterial infection like the Lyme bacteria.

The neglect of the co-infections can cause cardiac issues, hypercoagulation issues, and liver issues...everything the ER visit just revealed! I wont even mention the cognitive issues and other neurological issues that we are dealing with on a daily basis. Suffice to say, everything these doctors at the conference were teaching and warning against are exactly the things that are unfolding in our lives...exactly as they described it would if not treated appropriately and aggressively.

So here we are on Saturday evening (ER visit was on Monday) and my PCP still has not called back. On the bright side, my Lyme doc did call on my way out the door to this conference and told me that I should just take a baby aspirin for the clotting issue. I explained that the ER doctor said I needed an aggressive blood thinner. So then he said he felt heparin would be overkill...then I could hear him reading my lab report and shuffeling through the papers I faxed and I told him to look at a particular report...he did and said that he would prescribe heparin only until I could see hematologist...another specialist. (I will explain the insurance situation here below in just a while). Then before we got off the phone he said he did not want to prescribe the heparin (which would have only cost me $10 a month) but wanted to prescribe this more "expensive" brand instead.

So now that I actually had his approval to take a blood thinner, I grabbed the heparin I already had in my closet and packed it with me for my conference. When I got home I called the pharmacy to see how much my script was going to be...granted, it was not earth shattering, but it was 3 times more expensive than the heparin he was going to prescribe to begin with, so I told the pharmacy to call him on monday and tell him I needed the generic brand due to financial reasons.

THE FINANCES OF IT ALL:

In case you are not aware, insurance is a spawn of satan, I am sure of it now! LOL!!

Let me see if I can find an ounce of humor left anywhere in me and see if I can try to make some Lymeaide of this Lyme that has been dealt to us:

Yearly Insurance Premiums: $6,480/yr
PCP in-network Deductible: $3,000/yr
Lyme specialist out-of-network deductible: $6000/yr
Precription deductible: $200/yr
Out of pocket medicine cost: $1800/yr

total yearly out of pocket medical expenses : $17, 480
before our insurance will kick in and pay 80% in network and 70% out of network

The cost of watching illegal aliens get FREE full medical benefits at our local county JPS Health Network (when my mom gets no help at all because she makes $100 a month too much for coverage)...PRICELESS.

Okay...I really tried to find the humor here...but I'm still NOT laughing...and I can bet you are not either.

Now here is a sobering thought...our yearly medical expenses exceed our rent/mortgage option by almost $1000 a year!

And for the record, I love this country too much to renounce my citizenship for the cost of free healthcare.

I guess this is one strange way to "die for your country"...and darn it, I bet they wont even drape the US FLAG that I dearly cherish over my casket either! At this point, I would be happy to give honor to the US flag that was flown upside down UNDER a mexican flag in our own country...at a public school! I would be honored to have that flag, if they would so donate it to my cause!....but I digress....

So pray for us...I think the most tragic thing that happened this week, was not so much the gloom and doom reports we received....but that I lost my ability to laugh...and I have yet to be able to stop the tears and my eyes are swolen near shut...not out of self pity, but that I knew that if ever I lost the ability to LAUGH I would be in bad shape....and I am truly in bad shape now.

Please continue to pray...

Love, Dawn
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PS...I forgot to mention that I actually got to the point of looking up a counselor who is experienced in dealing with Chronic Illness management, so I went to my insurance web page only to find this listed in the EXCLUSIONS for mental health benefits:

neurological disorders and other disorders with a known physical basis.

HHHmmm...what a bummer for the patient who needs counseling to help deal with the neurological issues from the known physical cause of Lyme Disease....yeah, I'm really bummed out about that one.